Real Talk: Eosinophilic Diseases – Détails, épisodes et analyse

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Evan S. Dellon, MD, and Elizabeth T. Jensen, PhD, about a paper they published on predictors of patients receiving no medication for treatment of eosinophilic esophagitis.

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:52] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:14] Holly introduces today's topic, predictors of not using medication for EoE, and today's guests, Dr. Evan Dellon and Dr. Elizabeth Jensen.

[1:29] Dr. Dellon is an Adjunct Professor of Epidemiology at the University of North Carolina School of Medicine in Chapel Hill. He is also the Director of the UNC Center for Esophageal Diseases and Swallowing.

[1:42] Dr. Dellon's main research interest is in the epidemiology, pathogenesis, diagnosis, treatment, and outcomes of eosinophilic esophagitis (EoE) and eosinophilic GI diseases (EGIDs).

[1:55] Dr. Jensen is a Professor of Epidemiology with a specific expertise in reproductive, perinatal, and pediatric epidemiology. She has appointments at both Wake Forest University School of Medicine and the University of North Carolina at Chapel Hill.

[2:07] Her research primarily focuses on etiologic factors in the development of pediatric immune-mediated chronic diseases, including understanding factors contributing to disparities in health outcomes.

[2:19] Both Dr. Dellon and Dr. Jensen also serve on the Steering Committee for EGID Partners Registry.

[2:24] Ryan thanks Dr. Dellon and Dr. Jensen for joining the podcast today.

[2:29] Dr. Dellon was the first guest on this podcast. It is wonderful to have him back for the 50th episode! Dr. Dellon is one of Ryan's GI specialists. Ryan recently went to North Carolina to get a scope with him.

[3:03] Dr. Dellon is an adult gastroenterologist at the University of North Carolina at Chapel Hill. He directs the Center for Esophageal Diseases and Swallowing. Clinically and research-wise, he is focused on EoE and other eosinophilic GI diseases.

[3:19] His research interests span the entire field, from epidemiology, diagnosis, biomarkers, risk factors, outcomes, and a lot of work, more recently, on treatments.

[3:33] Dr. Jensen has been on the podcast before, on Episode 27. Holly invites Dr. Jensen to tell the listeners more about herself and her work with eosinophilic diseases.

[3:46] Dr. Jensen has been working on eosinophilic gastrointestinal diseases for about 15 years. She started some of the early work around understanding possible risk factors for the development of disease.

[4:04] She has gone on to support lots of other research projects, including some with Dr. Dellon, where they're looking at gene-environment interactions in relation to developing EoE.

[4:15] She is also looking at reproductive factors as they relate to EoE, disparities in diagnosis, and more. It's been an exciting research trajectory, starting with what we knew very little about and building to an increasing understanding of why EoE develops.

[5:00] Dr. Dellon explains that EoE stands for eosinophilic esophagitis, a chronic allergic condition of the esophagus.

[5:08] You can think of EoE as asthma of the esophagus or eczema of the esophagus, although in general, people don't grow out of EoE, like they might grow out of eczema or asthma. When people have EoE, it is a long-term condition.

[5:24] Eosinophils are a type of white blood cell, specializing in allergy responses. Normally, they are not in the esophagus. When we see them there, we worry about an allergic process. When that happens, that's EoE.

[5:40] Over time, the inflammation seen in EoE and other allergic cell activity causes swelling and irritation in the esophagus. Early on, this often leads to a range of upper GI symptoms — including poor growth or failure to thrive in young children, abdominal pain, nausea, and symptoms that can mimic reflux.

[5:58] In older kids, symptoms are more about trouble swallowing. That's because the swelling that happens initially, over time, may turn into scar tissue. So the esophagus can narrow and cause swallowing symptoms like food impaction.

[6:16] Ryan speaks of living with EoE for decades and trying the full range of treatment options: food elimination, PPIs, steroids, and, more recently, biologics.

[6:36] Dr. Dellon says Ryan's history is a good overview of how EoE is treated. There are two general approaches to treating the underlying condition: using medicines and/or eliminating foods that we think may trigger EoE from the diet.

[6:57] For a lot of people, EoE is a food-triggered allergic condition.

[7:01] The other thing that has to happen in parallel is surveying for scar tissue in the esophagus. If that's present and people have trouble swallowing, sometimes stretching the esophagus is needed through esophageal dilation.

[7:14] There are three categories of medicines used for treatment. Proton pump inhibitors are reflux meds, but they also have an anti-allergy effect in the esophagus.

[7:29] Topical steroids are used to coat the esophagus and produce an anti-inflammatory effect. The FDA has approved a budesonide oral suspension for that.

[7:39] Biologics, which are generally systemic medications, often injectable, can target different allergic factors. Dupilumab is approved now, and there are other biologics that are being researched as potential treatments.

[7:51] Even though EoE is considered an allergic condition, we don't have a test to tell people what they are allergic to. If it's a food allergy, we do an empiric elimination diet because allergy tests aren't accurate enough to tell us what the EoE triggers are.

[8:10] People will eliminate foods that we know are the most common triggers, like milk protein, dairy, wheat, egg, soy, and other top allergens. You can create a diet like that and then have a response to the diet elimination.

[8:31] Dr. Jensen and Dr. Dellon recently published an abstract in the American Journal of Gastroenterology about people with EoE who are not taking any medicine for it. Dr. Jensen calls it a real-world data study, leveraging electronic health record patient data.

[8:51] It gives you an impression of what is actually happening, in terms of treatments for patients, as opposed to a randomized control trial, which is a fairly selected patient population. This is everybody who has been diagnosed, and then what happens with them.

[9:10] Because of that, it gives you a wide spectrum of patients. Some patients are going to be relatively asymptomatic. It may be that we arrived at their diagnosis while working them up for other potential diagnoses.

[9:28] Other patients are going to have rather significant impacts from the disease. We wanted to get an idea of what is actually happening out there with the full breadth of the patient population that is getting diagnosed with EoE.

[9:45] Dr. Jensen was not surprised to learn that there are patients who had no pharmacologic treatment.

[9:58] Some patients are relatively asymptomatic, and others are not interested in pursuing medications initially or are early in their disease process and still exploring dietary treatment options.

[10:28] Holly sees patients from infancy to geriatrics, and if they're not having symptoms, they wonder why bother treating it.

[10:42] Dr. Jensen says it's a point of debate on the implications of somebody who has the disease and goes untreated. What does that look like long-term? Are they going to develop more of that fibrostenotic pattern in their esophagus without treatment?

[11:07] This is a question we're still trying to answer. There is some suggestion that for some patients who don't manage their disease, we very well may be looking at a food impaction in the future.

[11:19] Dr. Dellon says we know overall for the population of EoE patients, but it's hard to know for a specific patient. We have a bunch of studies now that look at how long people have symptoms before they're diagnosed. There's a wide range.

[11:39] Some people get symptoms and get diagnosed right away. Others might have symptoms for 20 or 30 years that they ignore, or don't have access to healthcare, or the diagnosis is missed.

[11:51] What we see consistently is that people who may be diagnosed within a year or two may only have a 10 or 20% chance of having that stricture and scar tissue in the esophagus, whereas people who go 20 years, it might be 80% or more.

[12:06] It's not everybody who has EoE who might end up with that scar tissue, but certainly, it's suggested that it's a large majority.

[12:16] That's before diagnosis. We have data that shows that after diagnosis, if people go a long time without treatment or without being seen in care, they also have an increasing rate of developing strictures. 

[12:29] In general, the idea is yes, you should treat EoE, because on average, people are going to develop scar tissue and more symptoms. For the patient in front of you with EoE but no symptoms, what are the chances it's going to get worse? You don't know.

[13:04] There are two caveats with that. The first is what we mean by symptoms. Kids may have vomiting and growth problems. Adults can eat carefully, avoiding foods that hang up in the esophagus, like breads and overcooked meats, sticky rice, and other foods.

[13:24] Adults can eat slowly, drink a lot of liquid, and not perceive they have symptoms. When someone tells Dr. Dellon they don't have symptoms, he will quiz them about that. He'll even ask about swallowing pills. 

[13:40] Often, you can pick up symptoms that maybe the person didn't even realize they were having. In that case, that can give you some impetus to treat.

[13:48] If there really are no symptoms, Dr. Dellon thinks we're at a point where we don't really know what to do.

[13:54] Dr. Dellon just saw a patient who had a lot of eosinophils in their small bowel with absolutely no GI symptoms. He said, "I can't diagnose you with eosinophilic enteritis, but you may develop symptoms." People like that, he will monitor in the clinic.

[14:14] Dr. Dellon will discuss it with them each time they come back for a clinic visit.

[14:19] Holly is a speech pathologist, but also sees people for feeding and swallowing. The local gastroenterologist refers patients who choose not to treat their EoE to her. Holly teaches them things they should be looking out for.

[14:39] If your pills get stuck or if you're downing 18 ounces during a mealtime, maybe it's time to treat it. People don't see these coping mechanisms they use that are impacting their quality of life. They've normalized it.

[15:30] Dr. Dellon says, of these people who aren't treated, there's probably a subset who appropriately are being observed and don't have a medicine treatment or are on a diet elimination.

[15:43] There's also probably a subset who are inappropriately not on treatment. It especially can happen with students who were under good control with their pediatric provider, but moved away to college and didn't transfer to adult care.

[16:08] They ultimately come back with a lot of symptoms that have progressed over six to eight years.

[16:18] Ryan meets newly diagnosed adult patients at APFED's conferences, who say they have no symptoms, but chicken gets caught in their throat. They got diagnosed when they went to the ER with a food impaction.

[16:38] Ryan says you have to wonder at what point that starts to get reflected in patient charts. Are those cases documented where someone is untreated and now has EoE?

[16:49] Ryan asks in the study, "What is the target EGID Cohort and why was it selected to study EoE? What sort of patients were captured as part of that data set?"

[16:58] Dr. Jensen said they identified patients with the ICD-10 code for a diagnosis of EoE. Then they looked to see if there was evidence of symptoms or complications in relation to EoE. This was hard; some of these are relatively non-specific symptoms.

[17:23] These patients may have been seeking care and may have been experiencing some symptoms that may or may not have made it into the chart. That's one of the challenges with real-world data analyses.

[17:38] Dr. Jensen says they are using data that was collected for documenting clinical care and for billing for clinical care, not for research, so it comes with some caveats when doing research with this data.

[18:08] Research using electronic health records gives a real-world perspective on patients who are seeking care or have a diagnosis of EoE, as opposed to a study trying to enroll a patient population that potentially isn't representative of the breadth of individuals living with EoE.

[18:39] Dr. Dellon says another advantage of real-world data is the number of patients. The largest randomized controlled trials in EoE might have 400 patients, and they are incredibly expensive to do.

[18:52] A study of electronic health records (EHR) is reporting on the analysis of just under 1,000. The cohort, combined from three different centers, has more than 1,400 people, a more representative, larger population. 

[19:16] Dr. Dellon says when you read the results, understand the limitations and strengths of a study of health records, to help contextualize the information.

[19:41] Dr. Dellon says it's always easier to recognize the typical presentations. Materials about EoE and studies he has done that led to medicine approvals have focused on trouble swallowing. That can be relatively easily measured.

[20:01] Patients often come to receive care with a food impaction, which can be impactful on life, and somewhat public, if in a restaurant or at work. Typical symptoms are also the ones that get you diagnosed and may be easier to treat.

[20:26] Dr. Dellon wonders if maybe people don't treat some of the atypical symptoms because it's not appreciated that they can be related to EoE.

[20:42] Holly was diagnosed as an adult. Ryan was diagnosed as a toddler. Holly asks what are some of the challenges people face in getting an EoE diagnosis.

[20:56] Dr. Jensen says symptoms can sometimes be fairly non-specific. There's some ongoing work by the CEGIR Consortium trying to understand what happens when patients come into the emergency department with a food bolus impaction.

[21:28] Dr. Jensen explains that we see there's quite a bit of variation in how that gets managed, and if they get a biopsy. You have to have a biopsy of the esophagus to get a diagnosis of EoE.

[21:45] If you think about the steps that need to happen to get a diagnosis of EoE, that can present barriers for some groups to ultimately get that diagnosis.

[21:56] There's also been some literature around a potential assumption about which patients are more likely to be at risk. Some of that is still ongoing. We know that EoE occurs more commonly in males in roughly a two-to-one ratio. Not exclusively in males, obviously, but a little more often in males.

[22:20] We don't know anything about other groups of patients that may be at higher risk. That's ongoing work that we're still trying to understand. That in itself can also be a barrier when there are assumptions about who is or isn't likely to have EoE.

[23:02] Dr. Dellon says that in adolescents and adults, the typical symptoms are trouble swallowing and food sticking, which have many causes besides EoE, some of which are more common.

[23:18] In that population, heartburn is common. Patients may report terrible reflux that, on questioning, sounds more like trouble swallowing than GERD. Sometimes, with EoE, you may have reflux that doesn't improve. Is it EoE, reflux, or both?

[24:05] Some people will have chest discomfort. There are some reports of worsening symptoms with exercise, which brings up cardiac questions that have to be ruled out first.

[24:19] Dr. Dellon mentions some more atypical symptoms. An adult having pain in the upper abdomen could have EoE. In children, the symptoms could be anything in the GI tract. Some women might have atypical symptoms with less trouble swallowing.

[24:58] Some racial minorities may have those kinds of symptoms, as well. If you're not thinking of the condition, it's hard to make the diagnosis.

[25:08] Dr. Jensen notes that there are different cultural norms around expressing symptoms and dietary patterns, which may make it difficult to parse out a diagnosis.

[25:27] Ryan cites a past episode where access to a GI specialist played a role in diagnosing patients with EoE. Do white males have more EoE, or are their concerns just listened to more seriously?

[25:57] Ryan's parents were told when he was two that he was throwing up for attention. He believes that these days, he'd have a much easier time convincing a doctor to listen to him. From speaking to physicians, Ryan believes access is a wide issue in the field.

[26:23] Dr. Dellon tells of working with researchers at Mayo in Arizona and the Children's Hospital of Phoenix. They have a large population of Hispanic children with EoE, much larger than has been reported elsewhere. They're working on characterizing that.

[26:49] Dr. Dellon describes an experience with a visiting trainee from Mexico City, where there was not a lot of EoE reported. The trainee went back and looked at the biopsies there, and it turned out they were not performing biopsies on patients with dysphagia in Mexico City.

[27:13] When he looked at the patients who ended up getting biopsies, they found EoE in 10% of patients. That's similar to what's reported out of centers in the developed world. As people are thinking about it more, we will see more detection of it.

[27:30] Dr. Dellon believes those kinds of papers will be out in the next couple of months, to a year.

[27:36] Holly has had licensure in Arizona for about 11 years. She has had nine referrals recently of children with EoE from Arizona. Normally, it's been one or two that she met at a conference.

[28:00] Ryan asks about the research on patients not having their EoE treated pharmacologically. Some treat it with food avoidance and dietary therapy. Ryan notes that he can't have applesauce, as it is a trigger for his EoE.

[28:54] Dr. Jensen says that's one of the challenges in using the EHR data. That kind of information is only available to the researchers through free text. That's a limitation of the study, assessing the use of dietary elimination approaches.

[29:11] Holly says some of her patients have things listed as allergies that are food sensitivities. Ryan says it's helpful for the patients to have their food sensitivities listed along with their food allergies, but it makes records more difficult to parse for research.

[30:14] Dr. Dellon says they identify EoE by billing code, but the codes are not always used accurately. Natural Language Processing can train a computer system to find important phrases. Their collaborators working on the real-world data are using it.

[30:59] Dr. Dellon hopes that this will be a future direction for this research to find anything in the text related to diet elimination.

[31:32] Dr. Jensen says that older patients were less likely to seek medication therapy. She says it's probably for a couple of reasons. First, older patients may have been living with the disease for a long time and have had compensatory mechanisms in place.

[32:03] The other reason may be senescence or burnout of the disease, long-term. Patients may be less symptomatic as they get older. That's a question that remains to be answered for EoE. It has been seen in some other disease processes.

[32:32] Dr. Dellon says there's not much data specifically looking at EoE in the older population. Dr. Dellon did work years ago with another doctor, and they found that older patients had a better response to some treatments, particularly topical steroids.

[32:54] It wasn't clear whether it was a milder aspect of the disease, easier to treat, or because they were older and more responsible, taking their medicines as prescribed, and having a better response rate. It's the flip side of work in the pediatric population.

[33:16] There is an increasingly aging population with EoE. Young EoE patients will someday be over 65. Dr. Dellon hopes there will be a cure by that point, but it's an expanding population now.

[33:38] Dr. Jensen says only a few sites are contributing data, so they hope to add additional sites to the study. For some of the less common outcomes, they need a pretty large patient sample to ask some of those kinds of questions.

[33:55] They will continue to follow up on some of the work that this abstract touched on and try to understand some of these issues more deeply.

[34:06] Dr. Dellon mentions other work within the cohort. Using Natural Language Processing, they are looking at characterizing endoscopy information and reporting it without a manual review of reports and codes. You can't get that from billing data.

[34:29] Similarly, they are trying to classify patient severity by the Index of Severity with EoE, and layer that on looking at treatments and outcomes based on disease severity. Those are a couple of other directions where this cohort is going.

[34:43] Holly mentions that this is one of many research projects Dr. Jensen and Dr. Dellon have collaborated on together. They also collaborate through EGID Partners. Holly asks them to share a little bit about that.

[34:53] Dr. Jensen says EGID Partners is an online registry where individuals, caregivers, and parents of children affected with EGIDs can join.

[35:07] EGID Partners also needs people who don't live with an EGID to join, as controls. That gives the ability to compare those who are experiencing an EGID relative to those who aren't.

[35:22] When you join EGID Partners, they provide you with a set of questionnaires to complete. Periodically, they push out a few more questionnaires.

[35:33] EGID Partners has provided some really great information about patient experience and answered questions that patients want to know about, like joint pain and symptoms outside the GI tract.

[36:04] To date, there are close to 900 participants in the registry from all over the world. As it continues to grow, it will give the ability to look at the patient experience in different geographical areas.

[36:26] Dr. Dellon says we try to have it be interactive, because it is a collaboration with patients. The Steering Committee works with APFED and other patient advocacy groups from around the world. 

[36:41] The EGID Partners website shows general patient locations anonymously. It shows the breakdown of adults with the condition and caregivers of children with the condition, the symptom distribution, and the treatment distribution.

[37:03] As papers get published and abstracts are presented, EGID Partners puts them on the website. Once someone joins, they can suggest a research idea. Many of the studies they have done have come from patient suggestions.

[37:20] If there's an interesting idea for a survey, EGID Partners can push out a survey to everybody in the group and answer questions relatively quickly.

[37:57] Dr. Dellon says a paper came out recently about telehealth. EoE care, in particular, is a good model for telehealth because it can expand access for patients who don't have providers in their area.

[38:22] EoE is a condition where care involves a lot of discussion but not a lot of need for physical exams and direct contact, so telehealth can make things very efficient. 

[38:52] EGID Partners surveyed patients about telehealth. They thought it was efficient and saved time, and they had the same kind of interactions as in person. In general, in-state insurance covered it. Patients were happy to do those kinds of visits again.

[39:27] Holly says Dr. Furuta, herself, and others were published in the Gastroenterology journal in 2019 about starting to do telehealth because patients coming to the Children's Hospital of Colorado from out of state had no local access to feeding therapy.

[39:50] Holly went to the board, and they allowed her to get licensure in different states. She started with some of the most impacted patients in Texas and Florida in 2011 and 2012. They collected data. They published in 2019 about telehealth's positive impact.

[40:13] When 2020 rolled around, Holly had trained a bunch of people on how to do feeding therapy via telehealth. You have to do all kinds of things, like make yourself disappear, to keep the kids engaged and in their chairs!

[40:25] Now it is Holly's primary practice. She has licenses in nine states. She sees people all over the country. With her diagnosis, her physicians at Mass General have telehealth licensure in Maine. She gets to do telehealth with them instead of driving two hours.

[40:53] Dr. Jensen tells of two of the things they hope to do at EGID Partners. One is trying to understand more about reproductive health for patients with an EGID diagnosis. Only a few studies have looked at this question, and with very small samples.

[41:15] As more people register for EGID Partners, Dr. Jensen is hoping to be able to ask some questions related to reproductive health outcomes.

[41:27] The second goal is a survey suggested by the Student Advisory Committee, asking questions related to the burden of disease specific to the teen population.

[41:48] This diagnosis can hit that population particularly hard, at a time when they are trying to build and sustain friendships and are transitioning to adult care and moving away from home. This patient population has a unique perspective we wanted to hear.

[42:11] Dr. Jensen and Dr. Dellon work on all kinds of other projects, too.

[42:22] Dr. Dellon says they have done a lot of work on the early-life factors that may predispose to EoE. They are working on a large epidemiologic study to get some insight into early-life factors, including factors that can be measured in baby teeth.

[42:42] That's outside of EGID Partners. It's been ongoing, and they're getting close, maybe over the next couple of years, to having some results.

[43:03] Ryan says all of those projects sound so interesting. We need to have you guys back to dive into those results when you have something finalized.

[43:15] For our listeners who want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes below.

[43:22] If you're looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder at apfed.org/specialist.

[43:31] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.

[43:41] Ryan thanks Dr. Dellon and Dr. Jensen for joining us today. This was a fantastic conversation. Holly also thanks APFED's Education Partners GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Evan S. Dellon, MD, MPH, Academic Gastroenterologist,
University of North Carolina School of Medicine

Elizabeth T. Jensen, MPH, PhD, Epidemiologist,

Wake Forest University School of Medicine,

University of North Carolina at Chapel Hill

Predictors of Patients Receiving No Medication for Treatment of Eosinophilic Esophagitis in the United States: Data from the TARGET-EGIDS Cohort

Episode 15: Access to Specialty Care for Eosinophilic Esophagitis (EoE)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

apfed.org/research/clinical-trials

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"I've been working on eosinophilic gastrointestinal diseases for about 15 years. I started some of the early work around understanding possible risk factors for the development of disease. I've gone on to support lots of other research projects." — Elizabeth T. Jensen, MPH, PhD

"You can think of EoE as asthma of the esophagus or eczema of the esophagus, although in general, people don't grow out of EoE, like they might grow out of eczema or asthma. When people have it, it really is a long-term condition." — Evan S. Dellon, MD, MPH

"There are two general approaches to treating the underlying condition, … using medicines and/or eliminating foods from the diet that we think may trigger EoE. I should say, for a lot of people, EoE is a food-triggered allergic condition." — Evan S. Dellon, MD, MPH

"I didn't find it that surprising [that there are patients who had no treatment]. Some patients are relatively asymptomatic, and others are not interested in pursuing medications initially or are … still exploring dietary treatment options." — Elizabeth T. Jensen, MPH, PhD

"We have a bunch of studies now that look at how long people have symptoms before they're diagnosed. There's a wide range. Some people get symptoms and are diagnosed right away. Other people might have symptoms for 20 or 30 years." — Evan S. Dellon, MD, MPH

"EGID Partners is an online registry where individuals, caregivers, and parents of children affected with EGIDs can join. EGID Partners also needs people who don't live with an EGID to join, as controls." — Elizabeth T. Jensen, MPH, PhD

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Dr. Andrew Lee, Vice President, Clinical Research at Uniquity Bio, about Thymic Stromal Lymphopoietin (TSLP) and eosinophilic esophagitis (EOE).

Disclaimer: The information provided in this podcast is designed to support, not replace, the relationship between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

[1:13] Holly introduces today's topic, Thymic Stromal Lymphopoietin (TSLP) and eosinophilic esophagitis (EOE), and today's guest, Dr. Andrew Lee, Vice President, Clinical Research at Uniquity Bio.

[1:36] Dr. Lee has nearly 20 years of experience in the clinical development of new vaccines, biologics, and drugs. Holly welcomes Dr. Lee.

[1:52] Dr. Lee trained in internal medicine and infectious diseases.

[1:58] Dr. Lee has been fascinated by the immune system and how it can protect people against infections, what happens when immunity is damaged, as in HIV and AIDS, and how to apply that knowledge to boost immunity with vaccines to prevent infections.

[2:16] Dr. Lee led the clinical development for a pediatric combination vaccine for infants and toddlers. It is approved in the U.S. and the EU.

[2:29] Dr. Lee led the Phase 3 Program for a monoclonal antibody to prevent RSV, a serious infection in infants. That antibody was approved in June 2025 for use in the U.S.

[2:44] In his current company, Dr. Lee leads research into approaches to counteract an overactive immune system. They're looking at anti-inflammatory approaches to diseases like asthma, EoE, and COPD.

[2:58] Dr. Lee directs the ongoing Phase 2 studies that they are running in those areas.

[3:28] Dr. Lee sees drug development as a chance to apply cutting-edge research to benefit people. He trained at Bellevue Hospital in New York City in the 1990s.

[3:40] When Dr. Lee started as an intern, there were dedicated ICU wards for AIDS patients because many of the sickest patients were dying of AIDS and its complications. 

[3:52] Before the end of Dr. Lee's residency, they shut down those wards because the patients were on anti-retroviral medications and were doing so well that they were treated as outpatients. They didn't need dedicated ICUs for AIDS patients anymore.

[4:09] For Dr. Lee, that was a powerful example of how pharmaceutical research and drug regimen can impact patients' lives for the better by following the science. That's what drove Dr. Lee to go in the direction of research.

[4:48] Dr. Lee explains Thymic Stromal Lymphopoietin (TSLP). TSLP serves as an alarm signal for Type 2 or TH2 inflammation, a branch of the immune responses responsible for allergic responses and also immunity against parasites.

[5:17] When the cells that line the GI tract and the cells that line the airways in our lungs receive an insult or an injury, they get a danger signal, then they make TSLP.

[5:28] This signal activates other immune cells, like eosinophils and dendritic cells, which make other inflammatory signals or cytokines like IL-4, IL-13, and IL-5.

[5:47] That cascade leads to inflammation, which is designed to protect the body in response to the danger signal, but in some diseases, when there's continued exposure to allergens or irritants, that inflammation goes from being protective to being harmful.

[6:15] That continued inflammation, over the years, can lead to things like the thickened esophagus with EoE, or lungs that are less pliant and less able to expand, in respiratory diseases.

[6:48] Dr. Lee says he thinks of TSLP as being a master switch for this branch of immune responses. If you turn on TSLP, that turns on a lot of steps that lead to generating an allergic type of response.

[7:06] It's also the same type of immune response that can fight off parasite infections. It's the first step in a cascade of other steps generating that type of immune response.

[7:30] Dr. Lee says people have natural genetic variation in the genes that incur TSLP.

[7:38] Observational studies have found that some people with genetic variations that lead to higher levels of TSLP in their bodies had an increased risk for allergic inflammatory diseases like EoE, atopic dermatitis, and asthma.

[8:13] Studies like the one just mentioned point to TSLP being important for increased risk of developing atopic types of diseases like EoE and others. There's been some work done in the laboratory that shows that TSLP is important for activating eosinophils. 

[8:38] There's accumulating evidence that TSLP activation leads to eosinophil activation, other immune cells, or white blood cells getting activated.

[9:07] Like a cascade, those cells turn on T-cells and B-cells, which are like vector cells. They lead to direct responses to fight off infections, in case that's the signal that leads to the turning on TSLP.

[9:48] Ryan refers to a paper published in the American Journal of Gastroenterology exploring the role of TSLP in an experimental mouse model of eosinophilic esophagitis. Ryan asks what the researchers were aiming to find.

[10:00] Dr. Lee says the researchers were looking at the genetic studies we talked about, the observational studies that are beginning to link more TSLP with more risk for EoE and those types of diseases.

[10:12] The other type of evidence that's accumulating is from in vitro (in glass) experiments or test tube experiments, where you take a couple of cells that you think are relevant to what's going on.

[10:28] For example, you could get some esophageal cells and a couple of immune cells, and put TSLP into the mix, and you see that TSLP leads to activation of those immune cells and that leads to some effects on the esophageal cells.

[10:42] Those are nice studies, but they're very simplified compared to what you can do in the body. These researchers were interested in extending those initial observations from other studies, but working in the more realistic situation of a mouse model.

[11:00] You have the whole body of the mouse being involved. You can explore what TSLP is doing and model a disease that closely mimics what's happening with EoE in humans.

[12:23] They recreated the situation of what seems to be happening in EoE in people. We haven't identified it specifically, but there's some sort of food allergen in patients with EoE that the immune system is set off by.

[12:55] What researchers are observing in this paper is that in these mice that were treated with oxazolone, there is inflammation in the esophagus, an increase in TSLP levels, and eosinophils going into the esophageal tissues.

[13:15] Dr. Lee says, that's one of the main ways we diagnose EoE; we take a biopsy of the esophagus and count how many eosinophils there are. Researchers saw similar findings. The eosinophil count in the esophageal tissues went way up in these mice. 

[13:34] Researchers also saw other findings in these mice that are very similar to EoE in humans, such as the esophageal cells lining the esophagus proliferating. They even saw that new blood vessels were being created in that tissue that's getting inflamed.

[14:00] Dr. Lee thinks it's a very nice paper because it shows that correlation: Increase TSLP and you see these eosinophils going to the esophagus, and these changes that are very reminiscent of what we see in people with EoE.

[14:51] In this paper, the mice made the TSLP, and researchers were able to measure the TSLP in the esophageal tissue. The researchers didn't introduce TSLP into the mice. The mice made the TSLP in response to being repeatedly exposed to oxazolone.

[15:20] That's key to the importance of the laboratory work. The fact that the TSLP is made by the mice is important. It makes it a very realistic model for what we're seeing in people.

[15:41] In science, we like to see correlation. The researchers showed a nice correlation.

[15:46] When TSLP went up in these mice, and the mice were making more TSLP on their own, at the same time, they saw all these changes in the esophagus that look a lot like what EoE looks like in people. 

[16:01] They saw the eosinophils coming into the esophagus. They saw the inflammation go up in the esophagus. What Dr. Lee liked about this paper is that they continued the story.

[16:15] The researchers took something that decreases TSLP levels, an antibody that binds to and blocks TSLP, and when they did that, they saw the TSLP levels come down to half the peak level.

[16:35] Then they saw improvement in the inflammation in the esophagus. They saw that the amount of eosinophils decreased, and the multiplication of the esophageal cells went down. The number of new blood vessels went down after the TSLP was reduced.

[16:53] Dr. Lee says, you see correlation. The second part is evidence for causation. When you take TSLP away, things get better. That gives us a lot of confidence that this is a real finding. It's not just observational. There is causation evidence here.

[18:26] Ryan asks if cutting TSLP also help reduce other immune response cells. Dr. Lee says TSLP is the master regulator for this Type 2 inflammation. It definitely touches and influences other cells besides eosinophils.

[18:44] TSLP affects dendritic cells, which are an important type of immune cell, like a coordinating cell that instructs other cells within the immune system what to do. In this paper, they looked at a lot of other effects of TSLP on the tissues of the body.

[19:10] Dr. Lee says, There's a lot of research on TSLP, and one of the reasons we're excited about the promise of TSLP is that it's so far upstream; so much of the beginning, that it's affecting other cells.

[19:29] Its effects could be quite broad. If we're able to successfully block TSLP, we could block a lot of different effects.

[19:40] One treatment for EoE is dupilumab, which blocks IL-4 and IL-13 specifically, and that works well, but TSLP has the potential to have an even greater effect than blocking IL-4 and IL-13, since it is one step before turning on IL-4 and IL-13. 

[20:14] That's one of the reasons researchers are excited about the promise of blocking TSLP. There are studies ongoing of TSLP blockers in people with EoE.

[20:34] Ryan asks if there are negative repercussions from blocking TSLP. Dr. Lee says in this study and in people, we are not completely blocking TSLP by any means. There will still be residual TSLP activated, even with very potent drugs.

[21:01] In the study, they block TSLP about 50%‒60%. TSLP is involved in immunity against parasites. In studies with people, they make sure not to include anybody who has an active parasitic infection. A person under treatment should not be in a study.

[21:27] Dr. Lee says we haven't seen any problems with parasitic infections becoming more severe, but that is a theoretical possibility, so for that reason, in studies with TSLP blockers, we generally exclude patients with known parasitic infections.

[22:17] What excited Dr. Lee in this paper was that they showed that when you block TSLP in the mice, then you get real effects in their tissues. Eosinophils went away. The thickening of the basal layers in the esophagus got much better.

[22:38] That kind of real effect reflected in the tissue is super exciting to see. That gives us more confidence that this could work in people, since we're seeing it in a realistic whole-body model in the mice.

[23:12] Dr. Lee says there are ongoing clinical studies on TSLP blockers for EoE. His company is studying an antibody that blocks TSLP in eczema, COPD, and EoE. One of the exciting things about immunology is that it affects many different parts of the body.

[23:42] EoE is associated with other immune-type disorders. There's a high percentage of patients with EoE who have other diseases. EoE coexists with asthma, atopic dermatitis, and chronic rhinitis.

[24:09] It's exciting that if you figure out something that's promising for one disease that TSLP affects, it could have very broad-ranging implications for a variety of diseases.

[24:22] Ryan shares his experience of his doctor talking to him about a TSLP blocker, tezepelumab, as a potential option when it's out of clinical trials. It would target something a little higher up the chain and help with some of his remaining symptoms.

[24:59] Ryan is excited to hear that this research is so encouraging and how it could potentially help treat EoE, asthma, and other conditions, all at once.

[25:16] Dr. Lee says that being in these later-stage studies is super exciting. If these late-stage trials are successful, the next step is to apply for regulatory approval with the various agencies around the world.

[26:40] Dr. Lee shares one takeaway for listeners to remember. Think of TSLP as an alarm that turns on inflammation. He compares TSLP to turning on an alarm during a robbery. There are multiple steps designed to protect the bank and the money.

[27:20] To extend that analogy, with TSLP, once you turn it on, all these other steps are going to happen. Inflammation is designed to protect the body. It's a protective response. If there's an infection, it can clear the infection.

[27:38] If the infection persists, as in HIV, the immune response, which is protective and beneficial, eventually becomes damaging. It becomes dysfunctional. In EoE, if you continually eat the allergic food, the inflammation becomes damaging to the esophagus.

[28:27] Long-term inflammation leads to replacing the normal esophageal tissue with fibrotic tissue, and that's why the esophagus eventually gets hardened and less able to let the food go through.

[28:40] In respiratory diseases, the soft tissue of the lung gets replaced with thicker tissue, and the lung is not able to expand.

[28:54] Dr. Lee says he people to think about TSLP as this master alarm switch. We hope that if you could turn off that TSLP, you could then avoid a lot of the complications that we see with chronic inflammation in these conditions.

[29:14] We're hopeful that you could even take away the symptoms that you see in these diseases, make patients feel better, and with extended treatment, you could begin to reverse some of the damage resulting from inflammation.

[29:32] Ryan likes that analogy and how Dr. Lee has concisely explained these complicated concepts.

[29:51] Dr. Lee thanks Holly and Ryan and adds one more plea to listeners. Please consider getting involved with research. Clinical trials cannot be done without patients. We need patients to advance new treatments.

[30:27] Researchers like Dr. Lee spend a lot of time thinking about how to make the studies not only informative but also fair to patients who decide to become involved. It's a lot of work and a fair amount of time commitment.

[30:44] If you don't want to be in a study, you can help by being on a patient feedback panel and reviewing protocols and informed consents. Follow your interests. Think about getting involved with research, however you can.

[31:06] Ryan and Holly are very grateful for the community, with so many wonderful clinicians and researchers, and so many patients who are willing to volunteer their time and their data to help researchers find better solutions going forward.

[31:26] Ryan thanks Dr. Lee for coming on and putting out that call to action. It's a great reminder for listeners and the patients in the community to look for those opportunities. Chat with your physician. Go to APFED's website. There's a link to active clinical trials.

[31:47] For our listeners who want to learn more about eosinophilic disorders, we encourage you to visit apfed.org and check out the links in the show notes below.

[31:53] For those looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED's Specialist Finder at apfed.org/specialist.

[32:01] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.

[32:11] Ryan thanks Dr. Andrew Lee for joining us today. We learned a lot. Holly also thanks APFED's Education Partners Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda for supporting this episode.

Mentioned in This Episode:

Andrew Lee, M.D., VP Clinical Research, Uniquity Bio

"A Mouse Model for Eosinophilic Esophagitis (EoE)" Current Protocols, Wiley Online Library

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

apfed.org/research/clinical-trials

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, Regeneron, and Takeda.

Tweetables:

"I see drug development as a chance to apply cutting-edge research to benefit people." — Andrew Lee, M.D.

"When the cells that line the GI tract and the cells that line the airways in our lungs receive an insult or an injury, they get a danger signal, then they make TSLP." — Andrew Lee, M.D.

"Observational studies have found that some people with genetic variations that lead to higher levels of TSLP in their bodies had an increased risk for allergic inflammatory diseases like EoE, atopic dermatitis, and asthma." — Andrew Lee, M.D.

"There's a lot of research on TSLP, and one of the reasons we're excited about the promise of TSLP is that it's so far upstream; so much of the beginning, that it's affecting other cells." — Andrew Lee, M.D.

"Please consider getting involved with research. We can't do these clinical trials without patients. We need patients to advance new treatments for patients." — Andrew Lee, M.D.

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Dr. Dan Atkins about Children's Hospital Colorado's multidisciplinary treatment program for eosinophilic gastrointestinal disorders (EGIDs).

In this episode, Ryan and Holly interview their friend, Dr. Dan Atkins. Ryan was a long-time patient of Dr. Atkins and Holly worked as a feeding specialist with Dr. Atkins at Children's Hospital Colorado. Together, Dr. Atkins and Dr. Glen Furuta developed the Gastrointestinal Eosinophilic Disease Program at Children's Hospital Colorado as a multidisciplinary treatment center for pediatric patients impacted by eosinophilic gastrointestinal diseases. They discuss how treatments and medicines have developed over the years. The clinic started with local patients but now also receives referrals from around the United States. Listen in for tips on identifying EGIDs and using multidisciplinary treatment.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Holly Knotowicz.

[1:19] Holly introduces today's topic, the evolution of eosinophilic gastrointestinal disorders, and the guest, Dr. Dan Atkins, a pediatric allergist at Children's

Hospital Colorado.

[1:32] With more than 40 years of experience as an allergist, Dr. Atkins has seen the evolution of eosinophilic disease patient care first-hand and helped establish the Gastrointestinal Eosinophilic Disease Program at Children's Hospital Colorado.

[1:46] The Gastrointestinal Eosinophilic Disease Program is a multi-disciplinary program designed for the optimal evaluation and treatment of children with eosinophilic gastrointestinal disorders.

[2:10] Dr. Atkins thanks Holly, Ryan, and APFED for programs like this podcast to help educate the population of patients with eosinophilic gastrointestinal diseases.

[2:39] Dr. Atkins chose a pediatric residency. The last rotation was with an incredible allergist, Dr. Lenny Hoffman, in Houston. Dr. Atkins loved seeing patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis.

[2:59] The thing Dr. Atkins liked about it was he could take kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well. He could see a change in their quality of life. That got him started.

[3:22] Dr. Atkins did an allergy and immunology fellowship in Buffalo, New York with Dr. Elliott Ellis and Dr. Elliott Middleton who had just written the Allergy: Principles and Practice text. They were incredible, brilliant mentors and wonderful people.

[3:55] Dr. Atkins went to the National Institutes of Health to do basic science research after learning of a double-blind, placebo-controlled food challenge by Dr. Allan Bock and Dr. May in Denver.

[4:27] Dr. Atkins did a clinical project on food allergy with Dr. Dean Metcalf, which was one of the first double-blind, placebo-controlled food challenges in adults. They published two papers on it.

[4:47] Then Dr. Atkins went to work on the faculty of National Jewish Health. He was there for 25 years.

[5:04] Dr. Atkins was invited to join the Children's Hospital of Colorado because they wanted to start an allergy program there.

[5:21] Dr. Atkins got interested in eosinophilic gastrointestinal diseases in 2006 after he saw a patient who had had difficulty eating, eosinophils in his esophagus, and food allergies. In another state, a doctor had put him on an elimination diet and he got better.

[5:42] The patient moved to Denver. Dr. Atkins saw him and found the case to be interesting. He looked in the literature and found an article on eosinophilic esophagitis by Dr. Alex Straumann.

[5:53] A gastroenterologist, Dr. Glen Furuta, came to Children's Hospital, looking to work with an allergist. Dr. Atkins met with him and they hit it off. They saw the need for a multidisciplinary program to take care of these patients.

[6:31] Dr. Atkins has always been interested in diseases that led to eosinophilia. Most of them were allergic diseases. Eosinophilic esophagitis and other eosinophilic gastrointestinal diseases came along with much more of a focus on eosinophils in the gut.

[6:45] The first case of eosinophilic esophagitis that Dr. Atkins treated was a patient in 2006. He believes he probably missed earlier cases just by not asking the right question, which is, "Does your child eat slower than everybody else?"

[7:18] Once Dr. Atkins started asking patients that question, it stunned him to find out how many patients said that was part of the issue. He followed up with testing and, sure enough, they had eosinophilic esophagitis.

[7:45] Dr. Atkins says that, in general, eosinophils are present in allergic conditions. If you look at "allergic snot," and stain it up, it's full of eosinophils. If you have eosinophilic esophagitis and allergic rhinitis, if you swallow snot, it will impact your EoE.

[8:40] Dr. Atkins tends to be more aggressive with using a topical nasal steroid spray with patients who have allergic rhinitis because that decreases the eosinophils in the nose.

[8:50] Dr. Atkins says since eosinophils are on their way to areas that are involved in allergic inflammation, that's how Dr. Atkins got interested in eosinophils. It played out with the multidisciplinary group and eosinophilic esophagitis. 

[9:07] Ryan went to see Drs. Atkins and Furuta when he was eight. Ryan is so thankful he was able to go to their clinic and is grateful that the doctors helped to create one of the first programs dedicated to treating EGIDs in the U.S.

[9:40] Dr. Atkins credits Dr. Furuta with the multidisciplinary program. They discussed who needed to be part of it. A gastroenterologist first but Dr. Atkins thought an allergist was also necessary. Treating other allergies helps the patient's eosinophilic condition.

[10:51] They decided they needed excellent nurses who loved working with kids. A lot of the kids had trouble eating, so the group needed feeding therapists and dieticians because these kids have a limited diet. They also needed a pathologist to read the slides.

[12:59] Because this is a burdensome disease, they needed psychologists for the child and the family. Learning coping mechanisms is a big part of the experience.

[14:20] As the program progressed, they saw they needed an endocrinologist to look at the children who weren't growing as expected. In clinic, they needed a child health person who could play games with the kids and keep them engaged during the long visits.

[14:44] That was how the program evolved. They had an idea but they had to show people it would be an active clinic that would grow and they had enough patients to warrant the program. It happened quickly.

[14:54] The program is fortunate to have a wonderful group of people who get along well and check their egos at the door. There are lots of conversations. Everybody's willing to listen and put their heads together. They compare notes and histories.

[15:46] Holly had been working as a feeding specialist at the hospital. Someone was on leave so Holly was put into the clinic. She had never heard of EoE; she didn't know she had it! Her first meeting was a roomful of professionals comparing notes on patients.

[16:31] Holly was in disbelief that these medical professionals met together for an hour weekly to discuss their patients with each other. Later, Holly followed a patient with Dr. Atkins, then Dr. Furuta, then a dietician, and then a nurse.

[17:01] As she followed the patient, Holly listened and recognized the symptoms. She thought that she might have EoE! She introduced herself to Dr. Atkins and asked for a referral for a diagnosis. She was diagnosed that year with EoE.

[17:25] Holly sees many unique things about the program. She was impressed that they had the foresight to include a feeding specialist, not a common specialty at the time. Holly also thinks it's neat that the clinic sees patients from all over the country.

[18:01] Dr. Atkins says the availability of care is improving across the country. When the program began, people had not heard of eosinophilic esophagitis, not even the local pediatricians. Allergists were just becoming aware of it. They had to be educated.

[18:29] There were people in other communities who didn't have access to multidisciplinary care. Over time the word has spread. Pediatricians are referring patients to the clinic for diagnosis. Care availability has improved.

[18:55] Not every patient needs a multidisciplinary program. If you have mild to moderate eosinophilic esophagitis and you're responding to a current therapy, are doing well, and are communicating well with your provider, that's great!

[19:10] If you need a second opinion or if you have a complicated case, there are some benefits to multidisciplinary care.

[19:33] The providers at the clinic listen to the children as well as to the parents. When a food is removed, a dietician can suggest an alternative the child might like.

[20:07] The clinic wanted to treat local patients but go beyond that, as well. They learn a lot from seeing patients from all over the country with different exposures and being treated by different doctors.

[20:17] When Ryan was young, he would go from his home in Georgia to Denver, yearly. He reflected it felt like summer camp. He got a scope one day and saw the full team of specialists the next few days. It was different from how he was treated before.

[21:06] Ryan says he was listened to and heard, and it was such a great experience for him as a patient to be seen in Dr. Atkins's clinic.

[21:46] Dr. Atkins says they are trying to teach children to be their own advocates. If the doctor does not listen to what the patients have to say, why should they be involved?

[22:50] A patient experience at the clinic starts with somebody deciding they need to go there and get a second opinion or a diagnosis. They get a referral to the clinic. Dr. Atkins mentions the need for administrative staff as part of the clinic team.

[23:40] The patient fills out forms and gives their records to be reviewed by a physician before being seen to see if the clinic is a good fit for them. If it is, the patient is scheduled with an appointment for each doctor and professional in the clinic.

[24:02] The patient records are seen by each professional on the team for how they relate to the professional's specialty. They decide what tests need to be done and if they are covered by insurance. 

[24:27] The care team meets before clinic to talk about all new and follow-up patients. Then the patient comes in to see the providers, one after another. Patients don't see all the providers in the same order. The endocrinologist and psychologist are not in the clinic.

[25:39] The clinic visit takes three to four hours. It may involve skin testing for allergies or spirometry for lung function. The patient is scheduled for an endoscopy. When appropriate, they offer transnasal endoscopy, which takes only eight minutes and does not require anesthesia.

[27:11] If the patient has a stricture and the esophagus needs to be dilated, the patient is asleep for that. There is also the esophageal string test, developed by Dr. Furuta. It takes a little over an hour and tells whether there is active disease or not.

[28:02] Care has been made easier. Patients have different options for testing. Holly points out that the family is a part of the team and they are involved in every process and decision. Dr. Atkins says that shared decision-making is a cornerstone of care.

[29:31] Dr. Atkins says what happens in the room is the care provider and patient connect and the patient talks about their problems with somebody they trust. To get the patient to do what they need to do, they have to understand and feel understood.

[31:03] When Dr. Atkins started treating patients with asthma at National Jewish, patients came for a long evaluation, sometimes months. The only treatments were theophylline and steroids. There were side effects to those medications.

[31:39] Dr. Atkins says it has been wonderful to be involved while new treatments have evolved. For eosinophilic esophagitis, when diet works for people, it works. He shares the experience of a teen who is doing great on a diet eliminating milk and eggs.

[32:56] Don't discount diet. It's still up front. On the other hand, that doesn't work for some people. A metered dose inhaler with the puff swallowed may work for some. That's ideal for teenagers. There are other treatment choices like budesonide.

[34:14] Swallowed steroids go to the liver, where they are metabolized. Now biologics are revolutionizing treatment. Not everyone needs biologics but they're a great choice for some.

[35:30] A patient starting out doesn't need biologics as a first treatment. Other therapies may be effective and cheaper. If a patient doesn't respond, they can go to a biologic. More treatments are being developed.

[36:42] Dr. Atkins wishes for a way to determine the food trigger with a simple test.

[38:00] Dr. Altkins remembers Ryan as a little kid who should have gotten off of milk but he just wouldn't do it. He also recalls a patient who thrived when he was put on the right elimination diet, giving up only a couple of foods.

[38:33] Dr. Atkins doesn't want to diminish any of his patients. Every patient is an individual. It's so much fun working through the problems, the goal, and the adjustments to get there and how the patient is dealing with it, and then watching them do better!

[40:35] The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be lifelong. But in the lifetime of patients he is seeing now, Dr. Atkins thinks we will see a cure, or at least, much easier, better treatments.

[40:56] In the population Dr. Atkins treats, they start treatment and all of a sudden, they're not having trouble swallowing. Everyone who had a dilation said they would do it again when needed. They can swallow better.

[41:44] But then, they have to maintain control of the inflammation. When people feel better, their impetus to take the medication drops off. If they stop taking their medications, a month later, they can't swallow their bagels.

[42:18] There are holidays, such as Halloween, that are challenging for kids who are on elimination diets. If they collect candy but can't eat any of it, that may be a problem.

[42:48] People who don't have EoE don't understand not being able to swallow. Dr. Atkins sees dads who have this but don't want to go get checked out. He tells them they need to be examples for their children and go get endoscopies to know if the condition is familial.

[43:53] Dr. Atkins says there are a number of other excellent programs in the country.

[44:24] Holly thanks Dr. Dan Atkins for sharing his expertise to help others and continually teaching the medical community how to recognize eosinophilic diseases and optimize care for all patients.

[44:40] Eosinophilic diseases are not going away. Allergists need to learn the ins and outs of all different eosinophilic disorders. The medications available to treat those disorders are increasing. 

[45:02] Early in your career as an allergist, learn as much immunology as you can and how the biologics work and the newer medications coming out. Follow side effects so you know what to say to your patients and what to look for.

[45:20] A lot of EoE patients get picked up in the allergist's office because they have other allergic diseases. As an allergist, ask if the child or parent eats slower than everybody else.

[45:57] Ryan thanks Dr. Dan Atkins for joining today and personally, for all he has done to treat Ryan over the years. He thanks Dr. Atkins on behalf of APFED and for being instrumental in many APFED conferences and educational materials.

[46:30] Dr. Atkins's biggest hope is that people sort out the pathways that lead to eosinophilic esophagitis and that we will have an array of targeted treatments for individual patients to cure that disorder for that patient without side effects.

[47:50] Dr. Atkins thanks Ryan and Holly again for the opportunity to join them. It's been such a pleasure. He thanks APFED again. He has been a big fan for years. Giving patients a voice to share their stories is incredibly important.

[47:34] For our listeners who would like to learn more about eosinophilic disorders, please visit APFED.org and check out the links below.

[47:41] If you're looking to find a specialist who treats eosinophilic disorders, you can use APFED's Specialist Finder at APFED.org/specialist.

[47:51] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/connections/.

[48:07] Holly thanks Dan and also thanks APFED's Education Partner Bristol Myers Squibb, GSK, Sanofi, and Regeneron, who supported this episode.

Mentioned in This Episode:

Dr. Dan Atkins, pediatric allergist

Children's Hospital Colorado

National Institutes of Health

National Jewish Health

Allergy: Principles and Practice, by Elliott Middleton Jr., Charles E. Reed, Elliot F. Ellis, N. Franklin Adkinson Jr., John W. Yunginger, and William W. Busse

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.

Tweetables:

"I loved helping patients with asthma, eczema, allergic rhinitis, food allergies, and anaphylaxis. You could take these kids who had potentially life-threatening conditions, work with them, and stabilize things, and they did really well." — Dr. Dan Atkins

"With patients who have allergic rhinitis, we tend to be more aggressive with using a topical nasal steroid spray because that decreases the eosinophils in the nose." — Dr. Dan Atkins

"We are trying to teach children to be their own advocates. … If you don't listen to what the patients have to say, why should [the patients] be involved?" — Dr. Dan Atkins

"The hard part about eosinophilic esophagitis is that very few people outgrow it. It tends to be a lifelong phenomenon." — Dr. Dan Atkins

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED's Executive Director, interview Kate Goncalves about her diagnosis and treatment journey with EoE.

In this episode, Ryan and Mary Jo discuss with Kate Goncalves how she lived with her symptoms for years before finally bringing them to the attention of her primary care physician at age 16, and how she was connected with a gastroenterologist and diagnosed with EoE. Kate discusses her transition from pediatric to adult care, and how she and her care team prepared for her to travel to go to college. They talk about her treatment plan of eliminating milk and using medications, and how it is a challenge to navigate EoE during the long days on her college campus. Kate also talks about the EoE research project she is working on as part of her pre-med studies, and shares advice for people living with EoE and going away to college.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:49] Ryan Piansky introduces the episode, brought to you thanks to the support of education partners Bristol Myers Squibb, GSK, Sanofi, and Regeneron, and co-host, Mary Jo Strobel.

[1:31] Mary Jo introduces Kate Goncalves, a 20-year-old living with EoE. Kate is the 2024 recipient of The APFED Abbott College Scholarship, thanks to a grant from Abbott, the makers of the EleCare®  brand elemental formula.

[2:05] Kate is from a small town in Connecticut. She is a junior at Vanderbilt University, studying biology and anthropology. She grew up with day-to-day symptoms of EoE but only expressed the symptoms to her doctor when she was 16 years old.

[2:23] At that point, she underwent testing and was diagnosed. Since then she has been trying to find a treatment plan that works for her. She has navigated changes in her treatment plan while going away to college. She comments that, in college, you don't always have control over the food you eat.

[2:42] It has been a challenge but she has a great support system and care team.

[3:15] In middle and high school, Kate got a food impaction nearly every day at lunch. She thought it was normal. When she finally brought it up to her primary care physician, the doctor suspected EoE. She also had the symptoms of heartburn or acid reflux.

[4:15] Kate immediately had an endoscopy scheduled and was then diagnosed with EoE.

[4:22] Prior to a diagnosis, Kate coped with symptoms by  drinking "a ton" of water with foods to help them go down her esophagus, which was narrowed from scarring. She also avoided bread and meats. She only recognized these as adaptive behaviors after she was diagnosed.

[5:32] Kate was referred to a gastroenterologist. That doctor is still part of Kate's care team. She also saw a nutritionist when looking for a treatment plan that worked for her.

[6:02] Kate avoids anything with dairy in it. Her elimination diet removed anything made with butter, milk, yogurt, and more. At her follow-up endoscopy, her eosinophils were way down so she didn't have to go through the six-food elimination diet. She was very grateful.

[6:43] Mary Jo clarifies for listeners who may not be familiar with the six-food elimination diet, that the foods removed from the diet are typically  milk, egg, wheat, soy, peanut/tree nut, and fish/shellfish.

[7:05/] Kate says it was a tough transition because more foods than you might expect have milk in them. She is grateful she didn't have to cut out gluten or nuts.

[7:32] Kate admits that sometimes she knows there is dairy in the food and eats it anyway. Then the symptoms are most often severe acid reflux and heartburn. She'll get a food impaction if she's been eating dairy for days or a lot of it at once.

[8:35] At school, sometimes the dining hall workers aren't aware if a food has dairy in it.  Some foods are mislabeled as vegan. So Kate often has dairy without knowing it until symptoms appear later. 

[9:12] Kate is on a proton pump inhibitor twice a day and a steroid medication. Her first treatment was the elimination of dairy. The summer before going to college, she was also put on these two medications, in case she was exposed to dairy.

[10:50] Kate had to switch from one steroid medication to another because the first one wasn't working for her varying schedule. She asked her doctor for another medication that fit her schedule better.

[11:31] Kate is very grateful to feel autonomy over her treatment plan. She feels her gastroenterologist is amazing. Kate is always free to give feedback about how she is feeling.

[11:46] Kate feels a more present role in her medical appointments now, versus before she was diagnosed. Both with her gastroenterologist and her primary care physician, she has learned to be comfortable being forward and truthful with her doctors.

[13:16] For patients who have not learned to speak up to their care team, Kate suggests being patient. It takes time to get used to the structure of appointments, follow-up appointments, and appointments with a new doctor.

[13:25] When Kate transitioned from her pediatrician to her adult doctors it took her a while to become comfortable with her gastroenterologist and her primary care physician. Don't be afraid to pose questions and concerns, even questions about other treatment plans.

[13:56] Your doctors are there to listen to you and to help you, and you can only gain from bringing something up to your doctor that you are afraid to bring up or that you aren't sure how the conversation is going to go.

[14:47] Kate explains how she tells her friends about her EoE triggers and symptoms and what eosinophils do to her esophagus. Most of her friends study biology and the immune system, so they can understand her condition and needs.

[16:12] EoE impacts Kate's social life. Kate sometimes sits out of activities involving dinners or events with food present. She doesn't want to be exposed to a trigger food. She has also missed events and activities due to hospital visits and appointments.

[16:37] If Kate is having a flare-up of her symptoms, she will also miss activities. All these things lead to feelings of exclusion. No one she knows has EoE.

[16:55] Because of her treatment plan and her medications, Kate's symptoms are somewhat limited so she can participate in activities as she chooses.

[17:14] Kate's advice for people who know someone with EoE is to be open-minded. EoE is kind of an invisible disorder. People often think that being allergic to dairy is lactose intolerance, which it is not. Do some research about EoE and its effects. Offer support.

[17:42] A patient has a care team whose job is to care for them. When family and friends include you and care for you, it's a very different feeling. As a friend, be patient and offer any support you can.

[18:34] When Kate travels, her best tool is communication. Informing food service staff about your allergy is the easiest way to ensure that the food you eat is safe. Kate does lots of research when she travels. This includes looking on restaurants' websites for dietary restrictions.

[20:43] Kate prepared for college by making sure she had a full semester supply of medications and ensuring that she was in close contact with her medical care team over the phone and through MyChart.

[21:19] She made plans with her gastroenterologist to make sure that if anything did come up or if the treatment plan wasn't working in the college setting, they would talk it through when it was needed and not wait until she was home for Thanksgiving.

[21:54] Kate is thankful she chose a school that was connected to a hospital. She feels more safe and prepared for a bad food impaction. She knows she can seek medical attention and have a team on-site very soon.

[22:43] The quality of the dining at the college was a factor in Kate's choice of schools. Vanderbilt has a dining hall completely free of the eight main allergens. When she eats there, she knows that the food she is eating will be safe, without having to ask.

[23:34] For people living with an eosinophilic disorder like EoE, Kate has two tips about preparing to go away to college. First, don't feel limited by your disorder. At first, Kate was afraid of being far away from her care team, but she couldn't be happier now.

[23:56] At college, there are resources and counseling to help you. Being away from home has taught Kate to be responsible as an adult for the treatment of her disorder. So, second, use college as an opportunity to gain responsibility in treating your disorder.

[25:11] Kate is working in a biomedical engineering lab at Vanderbilt University that is researching a way to diagnose and monitor EoE using saliva. They use Raman Spectroscopy to look for biomarkers in saliva from people with EoE, not found in the saliva of healthy people.

[25:51] A successful test would be less costly and quicker than an endoscopy with anesthesia. It would provide a point-of-care diagnostic that would lower the cost and increase the efficiency for patients.

[28:09] Raman Spectroscopy is a form of spectroscopy that measures the vibrational frequencies between chemical bonds. It reads the composition of biological samples. It can tell the amounts of lipids, proteins, or amino acids.

[26:37] The lab is researching the differences in the saliva of people with EoE from the saliva of healthy people. If they can find a difference, and if that difference is universal, we might be able to diagnose EoE using Raman Spectroscopy.

[26:55] Kate says that would be awesome because the anesthesia of endoscopy is "a lot", every time.

[27:09] Kate is on the pre-med track, which includes doing research. She wanted her research to be on something that she cared about. She is happy to be at a school that is a top research institution.

[27:48] When she learned of this biomedical engineering lab researching ways to diagnose EoE, she immediately reached out to the Principal Investigator and was invited to join. She has been a part of the lab for over a year and it's been an amazing experience!

[28:15] Before going to medical school, Kate plans to take one or two gap years after she graduates so she can further her research with EoE or with other eosinophilic disorders. She would love to see advancements in the field.

[29:16] Kate finds that the most challenging part of living with EoE is feeling lonely, She has never met anyone else with EoE. No one knows what it is when she first explains it to them. It's not a super common disorder.

[29:35] Because EoE is a rare condition, Kate doesn't have much of a community around it in her life. She was excited to learn about and connect with APFED through social media. Even so, it is easy to feel alone in her personal life.

[29:54] Kate doesn't want to have to worry constantly about her food or when to take her medications. She wants to live like a normal, healthy college student, but she can't. Sometimes she doesn't take her disorder as seriously as she should.

[30:25] Sometimes Kate will have that ice cream because everyone else is having it. She wants to live as though she doesn't have EoE. Navigating that without a community that relates to her struggle has been a challenge.

[30:51] Kate's parents, siblings, and friends support her, but it's not the same as having someone who completely understands and is going through it. She feels lonely.

[32:24] Kate says that awareness is super powerful. She went 16 years without knowing she had EoE. She wasn't educated on it. She is sure there are many living with untreated EoE just as she was.

[32:42] Kate encourages anyone listening to spread awareness for eosinophilic research. People are struggling with it. Kate was super excited to come on the podcast today to share her story with anyone in college who might be struggling with EoE.

[33:05] Kate says, if you're struggling with eosinophilic disorders, you're not alone. I'm there, too! She encourages listeners to continue to spread awareness and advocate for eosinophilic disorders.

[33:13] Ryan and Mary Jo thank Kate Goncalves for joining the podcast episode to share her story and help spread awareness.

[33:19] For our listeners who would like to learn more about EoE, please visit APFED.org/EOE. If you're looking to find a specialist who treats EoE, you can use APFED's Specialist Finder at APFED.org/specialist.

[33:40] Kate thanks Ryan and Mary Jo for this opportunity.

[33:43] Mary Jo also thanks Bristol Myers Squibb, GSK, Sanofi, and Regeneron, APFED's Education Partners who supported this episode.

Mentioned in This Episode:

APFED College Scholarship

Abbott

EleCare Elemental Formula

MyChart

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.

Tweetables:

"I go to school halfway across the country so I don't have close access to my care team and support. … Knowing I was going to be exposed to some dairy, my GI doctor thought it was best to put me on the steroid medication." — Kate Goncalves

"Your doctors are there for you. They're there to listen to you and to help you and you can only gain from bringing something up to your doctor." — Kate Goncalves

"Feeling support from family and friends… you feel so included and cared for. Feeling that from friends versus feeling that from your care team… they're very different. Your care team cares about you but that's their job." — Kate Goncalves

"I think anyone with a chronic illness would relate to this. I just turned 20 and I'm in college. I don't want to constantly worry about the food I'm eating and when to take my medications. I want to live like my friends." — Kate Goncalves

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, interview Dr. Priya Bansal about an allergist's role in treating EoE.

In this episode, Ryan and Holly discuss with Dr. Priya Bansal her career in internal medicine, pediatrics, allergies, and immunology. She emphasizes the importance of patient advocacy and encourages parents to not accept the diagnosis that their child is a picky eater when the child is refusing food. Dr. Bansal talks about the process of reaching a diagnosis and EoE treatment options.

Listen to this episode for more information about living with EoE and how an allergist can help.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:51] Ryan Piansky introduces the episode and co-host, Holly Knotowicz. Ryan and Holly will talk about eosinophilic esophagitis (EoE) and how an allergist can help.

[1:25] Holly introduces Dr. Priya Bansal, an internist, pediatrician, and allergist, who is on the faculty of Northwestern Feinberg School of Medicine and practices at the Asthma and Allergy Wellness Center in Illinois.

[2:06] Dr. Bansal does research and consulting and in a private practice. Throughout her 20-year career, she has enjoyed treating chronic and difficult-to-treat diseases.

[3:06] Now, she enjoys patient advocacy, advocating for EoE, and working with the American College of Allergy, Asthma, and Immunology House of Delegates and the American Academy of Allergy, Asthma, and Immunology.

[3:38] For new listeners, EoE is an allergic and immune disease of the esophagus. With EoE, eosinophils are found in the lining of the esophagus, causing inflammation, and inviting more eosinophils. EoE is a chronic inflammation of the esophagus.

[4:30] A child might have symptoms of food refusal, regurgitation, and abdominal pain. Adults may feel food sticking. The standard for finding eosinophils is endoscopy with six biopsies; two proximal, two mid, and two distal.

[5:24] It is a patchy disease, so the allergist will want to partner with a gastroenterologist who will do the biopsies at the three different levels.

[6:10] Holly tells how she didn't get diagnosed until she was in her mid-twenties. Her doctors thought she was vomiting for attention. They were not familiar with EoE. She was diagnosed as an adult when working at a major hospital.

[7:00] An allergist at a big academic center, working together with a team of doctors from multiple disciplines, may find it easier to diagnose EoE. Many allergists are not working on multi-disciplinary teams.

[7:34] An allergist can look at the resources in the community. Dr. Bansal has several gastroenterology centers that refer patients to her. They partner with Dr. Bansal on the diagnosis and treatment. 

[8:02] In other clinics, it may be the gastroenterologist who takes the lead in treatment and refers to the allergist to manage the allergic disease that exists on top of the EoE. 

[8:21] As a patient, the diagnosis process depends on where you live. If you have symptoms, don't give up. When Dr. Bansal started, she had to ask pathologists to stain biopsies for eosinophils. Today, staining is done routinely; she doesn't need to ask for it.

[9:07] You are your best advocate. If somebody doesn't believe you, that doesn't mean somebody else won't.

[9:22] Holly is a feeding specialist in Maine. In the three years she has been there, more than 100 people whom she has referred have been diagnosed with EoE.

[10:24] Dr. Bansal says that whether you see an allergist or a GI doctor, depends on which specialty takes the lead on EoE in your community. If you do not have a good rapport with your doctor, make a change. Partner with a doctor who advocates for you.

[11:59] Dr. Bansal advises that when seeing a different doctor, to print out your biopsies to bring. If you are using a biologic therapy, print out the scope that you had right before your biologic therapy, too. That biopsy is your golden ticket if you switch insurance companies.

[13:02] Dr. Bansal uses Care Everywhere, but she wants to see prints of your labs anyway. Not everyone opts into Care Everywhere. She likes the Patient Portal and she is looking forward to someday having a universal portal.

[13:43] Dr. Bansal recommends patients sign up with the Portal for their allergist and GI doctor to facilitate communication.

[15:14] Patients can scan their printed scope reports and share them with their care team, such as by putting them on a keychain USB drive, in a photo album on a phone, or a scanning app on a phone. There are different ways to store the data.

[15:39] Ryan describes how his mother organized his medical history, including all prescriptions, every procedure he has had, and all the doctors he has seen. Ryan was diagnosed at two-and-a-half years old, after visits to six or seven doctors.

[17:30] Dr. Bansal participated in an ACAAI video about the difficulty of diagnosing EoE. The video is linked in the show notes.

[17:41] It is a challenge to diagnose EoE. Some children have milder forms of the disease. When it's familial, some patients think it's normal for the family. Food sticking is not normal for everyone.

 
[20:08] The patient may live in an area with a lack of access to a knowledgeable specialist. Sometimes the patient just doesn't know who to see. When you make an appointment, call ahead and ask if they treat EoE at that office. Not all allergists do.

[22:18] A podcast episode with Dr. Emily McGowan told of her research study on the prevalence of EoE in urban vs. rural areas. It's not about rural vs urban but about having access to a specialist. Rural patients couldn't find a specialist.

[22:44] Ryan notes that you can use the Specialist Finder at APFED.org/specialist to see if there is a specialist in your area.

[23:12] With younger patients, Dr. Bansal finds that food refusal is a sign of EoE; that, and abdominal pain. By age 10, patients can say they are having trouble swallowing or that food is getting stuck.

[24:28] Holly finds that pediatricians are often not aware that picky eating and food aversion or food refusal are different situations. Food aversion comes from painful swallowing. Dr. Bansal is trying to create an understanding of EoE among pediatricians.

[26:15] Another sign Dr. Bansal watches for is FIRE (Food-induced Immediate Response of the Esophagus), which is different from PFAS (Pollen Food Allergy Syndrome). FIRE is a narrowing of the esophagus; PFAS is an oral issue. 

[27:13] As we get more research and learn more about the disease state and the nuances, the hope is that we could educate pediatricians on how to differentiate a picky eater from a patient with food aversion, using compensation mechanisms to swallow.

[28:15] Ryan compares this episode to a "greatest hits" episode, referring to FIRE and compensation mechanisms in the pediatric patient population. Those are great episodes for our listeners to go back and hear again.

[29:01] When a patient has an EoE diagnosis, Dr. Bansal practices shared decision-making with the patient. She outlines four options for the patient. The first option is eliminating dairy and known food allergens from the diet.

[31:01] With a food-elimination diet, ask your nutritionist what you need to eat more of because of the foods you are eliminating. If you're taking away dairy, you want to make sure you're getting calcium and Vitamin D. If you're taking away wheat, you need zinc.

[31:20] The second option Dr. Bansal talks about with her patients is a high-dose proton pump inhibitor (PPI). The third option is topical budesonide, swallowed with honey. Budesonide is a 12-week prescription. Flovent can also be swallowed. 

[32:46] The fourth option is dupilumab. Insurance companies may require you to fail option 2, the PPI, for eight to 12 weeks before paying for this.

[33:40] Dr. Bansal wants patients to understand that they can change between treatment options but she wants a patient to stay on an option for eight to 12 weeks and get a scope to see how it works before switching to another option. Follow-through is necessary.

[34:42] Listeners can watch the video of Dr. Jonathan Spergel's presentation at EOS Connection 2024 to learn more about eliminating milk for EoE and PPI-responsive EoE patients.

[35:14] Dr. Spergel also touched on nutritional deficiencies from some diet therapies. APFED just recorded a great podcast episode on that, as well.

[35:31] Dr. Sara Bluestein made a presentation at EOS Connection on eosinophilic asthma which included an overview of biologic treatments, not just for EoE but for many eosinophilic disorders.

[36:09] Holly loves Dr. Bansal's team approach with patients, where she acts as the coach, helping guide them toward the decision that will work best for their lives.

[36:20] As a feeding specialist, Holly is excited about the dupilumab option for patients who are on feeding tubes for severe inflammation in the esophagus.

[38:18] Budesonide oral is for 11 and up and dupilumab is for ages one and up. Any doctor who will give a patient the proper care may prescribe these to the patient. For dupilumab, the success rate goes up over time, starting at around 60% to around 80%.

[39:27] You want to get the biologic prescribed and approved for EoE. If it is approved for atopic dermatitis, the dosing is too weak for EoE and it fails at two-week dosing.

[39:56] Biologics need to be continued even when symptoms go away, as the symptoms will return. These two medicines are immunomodulators, not immunosuppressants so they don't increase the risk of other diseases.

[41:50] Patients need biopsies to get therapy.

[42:13] Ryan reminds listeners about the trans-nasal endoscopy podcast episode and the episode on the string test, which don't require sedation.

[43:06] Dr. Bansal notes that in trials, benralizumab failed as a treatment for EoE. It brought down the eosinophil count but it didn't treat the patient's dysphagia symptoms. Some specialists are wondering if there's more to EoE than just the eosinophils.

[44:30] Mepolizumab also reduces eosinophils. It is not known if it is effective against EoE. Tezepelumab is undergoing EoE trials now. It reduces eosinophils in the first two weeks. The data is not out on its effectiveness as an EoE treatment.

[44:51] At EOS Connection 2024, Dr. Bluestein gave a great talk on eosinophilic asthma, including information about biologic treatments. More information is coming out about them and their trials for other eosinophilic diseases.

[45:27] Dr. Bansal talks about how great it is to have new biologic options for people who tried an elimination diet, PPIs, and budesonide without relief from dysphagia. There was a void in the space, which is what dupilumab filled.

[46:27] Allergists think that at least 70% of EoE patients have at least one other atopic disease, such as eczema, allergic rhinitis, polyps, or asthma. In pollen season some patients' EoE gets worse.

[47:11] Dr. Bansal tells patients she doesn't want them dripping and draining into the esophagus. She doesn't want them to add inflammation where there is already inflammation. So she treats their allergies.

[47:44] After a dilation, a patient may feel cured. It's just a stopgap; they'll be back if they don't treat their EoE. Dr. Bansal hopes that allergists treat any allergies as well as the EoE, so the allergies don't have a negative impact on the EoE.

[49:41] There's no harm in getting an evaluation and seeing if there is something you could be doing to minimize the overall disease impact on your body and keep you healthier overall. Inflammation anywhere is never a good thing.

[50:41] Ryan and Holly thank Dr. Bansal for joining the podcast today.

[51:01] Dr. Bansal's last word: "I would advise parents to trust your instincts. If you think that something's wrong, even if somebody's telling you it's not wrong, get to the right people. Some insurances allow you to make an allergist appointment without a referral."

[52:18] If an allergist tells you there is a problem, know that they have years of experience with allergy patients. Dr. Bansal has hundreds of patients with EoE in the clinic. Create a partnership with an allergist.

[53:12] If you would like to learn more about EoE, please visit APFED.org/EOE. If you're looking to find a specialist like Dr. Bansal, you can use APFED's Specialist Finder at APFED.org/specialist.

[53:29] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/connections.

[53:39] Ryan thanks Dr. Bansal again for joining us on Real Talk: Eosinophilic Diseases. Dr. Bansal thanks Ryan and Holly. Holly would like to clone Dr. Bansal with all her enthusiasm. Holly also thanks Education Partners, Bristol Myers Squibb, GSK, Sanofi, and Regeneron for supporting this episode.

Mentioned in This Episode:

Priya Bansal M.D.
Northwestern Feinberg School of Medicine

Rush University Medical Center

Care Everywhere

Video: Diagnosing and treating pediatric EoE, ACAAI

Video: Diagnosing and treating adult EoE, ACAAI

"One-food versus six-food diet elimination therapy for EoE…", The Lancet

APFED EOS Connection Conference 2024

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of Bristol Myers Squibb, GSK, Sanofi, and Regeneron.

Tweetables:

"We have other things that we're working with. We're trying to find biomarkers and other tests that are not as invasive but for right now, it's the endoscopy with six biopsies; two proximal, two mid, and two distal." — Dr. Priya Bansal

"As we get more research and learn more and more about the disease state and the nuances and some of the things that we're seeing, obviously then, the hope is that we could educate people." — Dr. Priya Bansal

"You've got to have your biopsies. I know everyone hates them, everyone hates the scope, it's uncomfortable, it's annoying. I get it, but you need it to get therapy." — Dr. Priya Bansal

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, have a conversation about the latest findings from the EGID Partners Registry.

In this episode, Ryan and Holly discuss with Dr. Elizabeth Jensen two studies drawn from data obtained by EGID Partners Registry questionnaires. One study focuses on extraintestinal pain experienced by patients living with EoE and other eosinophilic gastrointestinal disorders (EGIDs). The second study considers vitamin and iron deficiencies reported by patients living with EoE and other EGIDs. Dr. Jensen hints at connected research she would like to pursue next.

Listen for more information about extraintestinal pain, vitamin deficiencies, EoE, and EGIDs.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:58] Ryan Piansky introduces the episode. He and co-host Holly Knotowicz will talk about the latest findings from the EGID Partners Registry.

[1:28] Holly introduces Dr. Elizabeth Jensen, an Associate Professor at the Wake Forest School of Medicine and an Adjunct Professor in the Department of Medicine at the University of North Carolina at Chapel Hill.

[1:58] Dr. Jensen has been working on research related to eosinophilic gastrointestinal diseases since she was in graduate school.

[2:11] Dr. Jensen's background is in maternal and child health. She was interested in how early life exposures alter colonization of the gut microbiome and how that can lead to immune dysregulation.

[2:33] Dr. Jensen became interested in EoE and eosinophilic gastrointestinal diseases because her family members had been affected by these conditions and researchers knew next to nothing about the pathogenesis of these conditions.

[2:52] Dr. Jensen's early research explored early life exposures that relate to the development of eosinophilic gastrointestinal diseases.

[3:02] That research paved the way for a variety of ongoing research studies in Denmark, the U.S., and through the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR).

[3:30] The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or multiple ones.

[4:21] The registry is also for individuals who haven't been diagnosed. The EGID Partners Registry gives a voice to individuals who are living with these conditions, in terms of directing where we go with research and asking patient-centered questions.

[4:58] To participate in the registry, go to EGIDPartners.org and register. Once you have registered you will receive a link to a questionnaire. The questionnaire can seem long.

[5:23] After the first questionnaire, the registry sometimes asks for updates to your baseline information and asks new questions that have been suggested by others.

[5:45] The EGID Partners Registry has a Scientific Advisory Committee, and patient advocacy groups, including APFED, physicians, and researchers, who direct where to go with the rich data that has been collected.

[6:07] Some of the questions are specific and asked by registry members with individual interests. Some of the questions are directed by input received by patient advocacy groups.

[6:48] After collecting these data, EGID Partners analyzes them and disseminates them by presenting them at meetings to get information to providers and individuals affected by these conditions.

[7:50] EGID Partners Registry did a study titled "Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases" and published a poster on it. They explored joint pain, leg pain, and headaches, to see if they were related to an eosinophilic condition.

[8:29] They studied pain severity and frequency as well as migraines. A high proportion of individuals reported pain. They studied those with EoE only and those with another EGID, including eosinophilic gastritis, eosinophilic enteritis, and eosinophilic colitis.

[9:06] The second group included individuals with or without EoE. In general, patients who have one of these non-EoE EGIDS, with or without EoE, tend to experience more frequent pain and more severe pain.

[9:30] They've also seen that result in looking at other comorbidities. It reinforces the idea that patients who have multi-segmental EGIDs, or one of these lower EGIDS, tend to experience, on average, more severe extraintestinal symptoms.

[10:39] The three areas of pain highlighted on the poster were legs, joints, and headaches. This was based on feedback from patients saying, "This is what we're experiencing, is it something that you could look into?"

[10:48] It doesn't preclude the possibility that there may be other types of extraintestinal manifestations that we should be looking at in the future.

[11:27] This study by the EGID Partners Registry feels very impactful to Dr. Jensen. It brings awareness to some of the challenges that individuals with these conditions are experiencing. Holly points out it's a way for patients to get access to experts.

[12:20] In this study, the EGID Partners Registry also looked at what proportion of individuals were taking either over-the-counter pain management medications or prescription medication.

[12:39] About the migraine headache pain, most of it was over-the-counter use, although some reported prescription medication.

[12:54] Ryan grew up experiencing leg pain all the time. He attributed it to his other chronic disorders. It wasn't until some years ago at an APFED conference that he heard a physician mention leg pain. Ryan had never considered it as an EoE symptom.

[13:38] One of the challenges the EGID Partners Registry has is that they don't have enough individuals registered to start dividing the sample up further, by age. Roughly two-thirds of the respondents were adults.

[14:12] It's also hard to get kids to report accurately what they are experiencing. It often comes down to the caregiver reporting it to the EGID Partners Registry, which brings its challenges.

[14:34] Ryan calls all patients listening to sign up with the EGID Partners Registry to allow the registry to get to some of these deeper questions.

[14:47] Dr. Jensen adds that people often want to understand why these pains are connected to EGIDs. EGID Partners Registry doesn't know why.

[15:02] There are underlying biological processes that could potentially contribute to this observation of the increased prevalence of extraintestinal pain manifestations. In the EGID population, there is the enrichment of connective tissue disorders and more.

[15:36] There is also evidence that there are increased comorbidities associated with a more inflammatory milieu. That could contribute to these extraintestinal manifestations of pain.

[15:55] Dr. Jensen hopes to bring greater awareness to patients and providers, honoring what the patient is experiencing and digging a little deeper to understand what may be going on for this patient.

[16:17] EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs. They looked at those who had been diagnosed with EoE alone and those who had another EGID, with or without EoE.

[16:47] In this study, unlike with the pain manifestation, they didn't see a statistically significant difference between EoE alone and the other EGIDs. There was some higher proportion in those with the lower EGIDs, but it didn't reach statistical significance.

[17:16] They saw a high proportion reporting physician-diagnosed vitamin deficiency, mainly Vitamin D and a few others. That suggests the need to screen patients for vitamin deficiency with a new diagnosis and when monitoring response to therapy.

[18:28] There are reasons why there could be vitamin deficiencies. You may have a restrictive diet or be avoiding certain foods because you know they are going to bother you, or for the lower EGIDs, it may be that you're experiencing malabsorption.

[19:04] Holly plans to send this study to the people she is working with. She will ask them to read it, and then work to get a baseline.

[19:56] A patient could ask for this test from any provider. Dr. Jensen says if it helps them to bring the evidence from these papers, that's great; she hopes this empowers patients when they talk with their providers about the care that makes sense for them.

[20:41] EGID Partners Registry compared those reporting a deficiency between those with EoE alone and those without EoE. Eighty-two percent of those with EoE reported a Vitamin D deficiency. About a fourth of each group reported a B12 deficiency.

[21:27] Iron was another deficiency reported by 55% in the EoE group and 69% in the Non-EoE EGID group. Vitamins D and B12, and Iron were the top deficiencies reported. Many of the respondents reported they were taking vitamins or dietary supplements. 

[22:32] Dr. Jensen thinks a nice follow-up study to this would be to learn the proportion of respondents taking vitamin injections or infusions because of malabsorption issues with oral supplements.

[22:37] Dr. Jensen thinks this study likely reflects an under-ascertainment of vitamin deficiency. A lot of patients aren't getting screened. We don't have the data yet because it's not a universal recommendation to screen for vitamin deficiencies.

[23:01] Dr. Jensen thinks awareness and increased screening will be key. Then we can start thinking about how we mitigate this.

[23:24] Patients did not report symptoms of vitamin deficiencies. Dr. Jensen thinks that's another good follow-up question. She stresses that it's important to screen for deficiencies whether or not symptoms of deficiencies are present.

[24:06] Holly considers her patients with various symptoms of vitamin deficiencies and wants to get on the website and ask questions. Dr. Jensen tells her there is a link on the registry site where you can suggest a question. She asks Holly to suggest a question!

[24:30] Patients were asked if they have ever had a vitamin deficiency and were also asked if they currently take vitamins or supplements. A vitamin pill is one type of supplement.

[25:10] The study also looked at the use of a variety of complementary and alternative medicine approaches that patients turn to because they're not getting adequate relief from traditional approaches to addressing their conditions.

[25:34] They saw a higher proportion of individuals with non-EoE EGIDs reporting the use of these kinds of alternative treatment approaches. Roughly a fourth of non-EoE EGID patients reported the use of a chiropractor, vs. 10% of EoE patients.

[26:11] Roughly one-fourth of non-EoE EGID patients reported turning to different herbal approaches in trying to get some relief for their conditions.

[26:49] Dr. Jensen says as a researcher, whenever she does a study, she is led to more questions. All of the research so far has opened the door to many more questions, including questions about individuals who don't have either EoE or another EGID.

[27:20] Dr, Jensen wonders, is this extraintestinal pain unique to those who have EoE and non-EoE EGIDs? How do we best mitigate this? What does the workup look like for the patient coming in with joint pain or leg pain?

[27:37] How can we understand the factors that contribute to this pain? How do we get providers thinking about screening for vitamin deficiencies so we have a better understanding of their prevalence in this patient population?

[28:04] If patients are not absorbing vitamins orally, How do we mitigate this? How do we optimize their nutrition so they are not dealing with vitamin deficiencies which can lead to other consequences down the road?

[28:24] The surprises are always, "What doors are getting opened as a result?" We've answered some questions but there are so many questions that we still need to answer.

[28:56] Ryan asks if a correlation was found in these studies between vitamin deficiencies and extraintestinal pain. He notices that missing his vitamins correlates with more leg pain. Dr. Jensen asks Ryan to go onto the website and pose that question!

[29:10] Dr. Jensen has not looked at the data in that way but she thinks it would be an interesting way to bring these two studies together and try to explain some of what they are observing.

[29:21] Holly thanks Dr. Jensen for sharing her expertise and this fascinating research to help all EGID patients have less painful and better quality lives.

[29:52] Dr. Jensen makes this request. "Please consider checking out the EGID Partners Registry website, joining, learning more about how you can contribute to this research, and introducing questions."

[30:04] "We're always looking for new questions and are excited to think about how we can partner with patients in addressing questions that matter to them. Help us continue to answer some of these critical questions."

[30:32] One topic Dr Jensen is interested in researching is the implications for reproductive health for having these conditions. Some research in another data source suggests potential implications.

[30:54] EGID Partners Registry observed and reported this year that there may be some indication of a longer time to pregnancy and a lower proportion of EGID patients experiencing a pregnancy. They want to look at that and understand it better.

[31:12] They want to understand it with more detail than they can get from the administrative data source with the initial questionnaire. EGID Partners Registry is pushing out a reproductive health history questionnaire now.

[31:29] EGID Partners Registry needs individuals to join and respond to the reproductive health questionnaire to help them understand this more deeply and some of the findings they are seeing initially in some of these other data sources.

[31:49] Ryan encourages listeners to learn more about Dr. Jensen's research and EGID Partners Registry by visiting EGIDPartners.org. To learn more about eosinophilic gastrointestinal disorders, visit APFED.org/egids.

[32:13] To find a specialist in eosinophilic disorders, use APFED's Specialist Finder at APFED.org/specialist. To connect with others impacted by eosinophilic diseases, join APFED's online community on the Inspired network at APFED.org/connections.

[32:31] Ryan thanks Dr. Jensen for joining us on Real Talk. Dr. Jensen thanks Ryan and Holly for having her on the podcast to talk about this research. Holly also thanks Education Partners, GSK, Sanofi, and Regeneron for supporting this episode.

Mentioned in This Episode:

Dr. Elizabeth Jensen PhD
Associate Professor at Wake Forest University School of Medicine
Adjunct Professor in the Department of Medicine at the UNC at Chapel Hill

Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

EGID Partners Registry

Digestive Disease Week (DDW)

"Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases"

"Frequent Report Of Vitamin Deficiencies And Use Of Supplements And Complementary/Alternative Treatment Approaches In Patients With Eosinophilic Gastrointestinal Diseases" (EGIDPartners Registry)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/egids

apfed.org/specialist

apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, and Regeneron.

Tweetables:

"The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or with multiple ones." — Dr. Elizabeth Jensen

"The EGID Partners Registry studied extraintestinal pain severity and frequency and migraines. There was a high proportion of individuals reporting experiencing pain." — Dr. Elizabeth Jensen

"EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs." — Dr. Elizabeth Jensen

"Is this unique to EoE and non-EoE EGIDs? … How do we best mitigate this for the patient who is coming in with joint pain or leg pain? What does the workup look like for those patients?" — Dr. Elizabeth Jensen

"The surprises are always, 'What doors are getting opened as a result?' We've answered some questions but there are so many questions that we still need to answer." — Dr. Elizabeth Jensen

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Mary Jo Strobel, APFED's Executive Director, have a conversation about EOS Connection 2024, live at the conference.

In this episode, Ryan and Mary Jo discuss highlights of EOS Connection 2024 including Ryan receiving the Founder's Award with his friend Zach, meeting many new patients and their families, and speaking with the wonderful researchers and presenters. They discuss the status of EoE as a rare disease, and how the awareness of many eosinophilic disorders is spreading.

Ryan shares some of his childhood memories of the EOS Connection conference and how great it is to see so many young patients participating in the kids and teen program. Ryan and Mary Jo discuss conference session highlights, including multidisciplinary care teams, the transition from pediatric to adult care, and coping with chronic illness. They invite you to register to watch recordings of the conferenc, which will be available until the end of 2024.

Listen in for more information about the EOS Connection 2024 conference.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Ryan Piansky introduces the episode. He and co-host Mary Jo Strobel are live from EOS Connection 2024, APFED's annual patient education conference.

[1:14] Mary Jo Strobel is happy to join Ryan for a wrap-up of key highlights and congratulates Ryan on receiving the Founder's Award. It was a joy for Mary Jo to present the award to Ryan.

[1:38] It was a nice surprise for Ryan. Beth, one of the founders, gave a lovely speech about Ryan and Zach, the other award recipient. Ryan has known Zach for 20-plus years and they are life-long friends. They've known Beth for just as long. It was perfect.

[2:23] Ryan's highlights of this year's conference were going down memory lane looking at the photos in the award presentation, meeting a lot of new patients and families, talking about experiences, and speaking with the wonderful researchers and speakers.

[3:13] Mary Jo appreciated how the speakers delivered their messages in a way that was easy to understand. It was great to have them involved in the conference.

[3:27] Mary Jo found it interesting when Dr. Spergel said on Friday that EoE may not be considered a rare disease for much longer and he raised the question: Is prevalence rising or are more people being diagnosed from better awareness around EoE?

[3:57] Ryan also says it's interesting to hear. APFED doesn't want to be necessary. Ideally, everyone can see their pediatrician, get the diagnosis early, and get treatment early, not only for EoE but for everything else.

[4:16] So many children come to APFED now, diagnosed early and on treatment options. On the adult side, so many people are coming to APFED saying they've lived with symptoms for years, not knowing what it was, and now have a diagnosis.

[4:51] While EoE is becoming more common, there are the rarer eosinophilic subsets to talk about, HES (hypereosinophilic syndrome), eosinophilic fasciitis, and EGPA (eosinophilic granulomatosis with polyangiitis).

[5:50] Dr. Amy Klion joined the conference virtually but attended the reception onsite. She is crucial to some of the rare eosinophilic disease research projects.

[5:59] Mary Jo found Friday's conversation with Drs. Sauer and McGowan about the management of EoE patients to be intriguing, in particular, when it was recognized that the GI and allergist might not always agree on approaches to treatment.

[6:09] There was a lot of excitement around less-invasive diagnosistics. Mary Jo says it was fun to see the videos of Drs. Sauer and McGowan trying the string test.

[6:25] Ryan has not yet tried the string test. It was fun for him to see that video of the two doctors trying it. The two doctors also shared their experience trying a six-food elimination diet. It was wonderful to have both doctors at the conference.

[6:47] Holly Knotowicz could not join the podcast today but she and Ryan have talked before on the podcast about the importance of multidisciplinary care teams and how crucial they can be.

[6:57] It was wonderful to hear from the doctors that they are working on multidisciplinary care teams on the pediatric side, through the transition process, and onto the adult side. Ryan hopes they can create a roadmap for other facilities to follow.

[7:13] In the string test, the doctors both gagged at the end, but they made it through and both said their patients do a better job going through it with a straight face! The string test is now available at multiple U.S. sites.

[7:42] For Mary Jo, it was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having. A robotics team came on site. There was a fun Family Feud-style game.

[8:11] Ryan says the activities were absolutely crucial for him growing up. It was one of his favorite parts of the conference, coming back year after year, being with his friends again in an environment where he was able to feel so normal and among peers.

[8:29] Ryan says you can lead a pretty normal life with EoE or other eosinophilic disorders, but it's not something your school peers can relate to. Coming to the conference is so impactful. Ryan heard multiple kids say, "Wow, you're just like me!"

[8:46] For Ryan, it's amazing that the conference can offer that environment for everybody. Ryan says it's wonderful to have the teen program with so many volunteers to help. Ryan met Zach in a kids and teen program and now he helps run them.

[9:13] Many incredible volunteers came to help; Ryan mentions some by name. It's wonderful that the conferences have been able to create such a tight-knit community for these patients.

[9:24] Mary Jo appreciated the volunteers doing the kids and teen programming this year for the conference and Amelia coming on-site as well.

[9:38] Mary Jo liked the talk on coping with chronic illness and Dr. Kichline's advice that you may not be able to change the situation but you can change how you react to it. It's important for children to learn and adults to remember; you are not your disease.

[10:06] Ryan remembers that point being emphasized when he was young. Thanks to APFED, we have a mentality here that you're a kid first and then you also have to deal with allergies, medicines, and doctors' appointments.

[10:18] We want to make sure that you can enjoy school, enjoy your childhood, go out, hang out with friends, and be who you want to be without having to have EoE at the forefront of your identity.

[10:32] That goes for all the other eosinophilic disorders and into adulthood. Those who were diagnosed 20 years ago are entering the workplace and figuring out how to be an adult with EoE. We have our lives first and part of that is managing this chronic illness.

[10:55] Ryan says it was wonderful that they were able to talk to the disability lawyer. Part of the management of chronic illness is making sure that you can be an adult or a kid and have financial support through something like SSI or employer-based disability.

[11:20] Mary Jo comments on the terrific presentations on the virtual day. It was great to hear from Dr. Fussner about EGPA. That tied in well with the new EGPA Toolkit that APFED launched this week in collaboration with the Vasculitis Foundation.

[11:47] You can find the new EGPA Toolkit at APFED.org.

[11:59] Ryan thinks it's exciting that the conference highlighted some of the more rare eosinophilic disease subsets. On the virtual day, presenters talked about EGPA, HES, eosinophilic asthma, and eosinophilic fasciitis.

[12:12] Eosinophilic fasciitis is so rare. Two people were chatting in private messages beside a presentation that they had never talked to someone else with eosinophilic fasciitis. Ryan also saw there were multiple HES patients in person this year.

[12:30] Ryan states that it is exciting to see patients even with these rare disease subsets being able to come together and hear about the latest research.

[12:37] Mary Jo answers that's why we call it EOS Connection! Ryan agrees; we're making those patient connections even among these rare subsets.

[12:47] Mary Jo had a fantastic time at the conference. She learned a lot and she hopes Ryan and everybody watching did, as well.

[12:57] If you did not participate in the live events, Mary Jo and Ryan encourage you to visit APFED.org/conference and register to access the virtual conference to watch the recordings and explore the virtual poster hall and exhibit hall, through the end of 2024.

[13:21] Ryan thanks our education partners for supporting this event. It was wonderful to have so many people here; he hopes everyone was able to enjoy the virtual event.

Mentioned in This Episode:

EOS Connection 2024 Conference

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/egids

apfed.org/specialist

apfed.org/connections

Tweetables:

"It was so wonderful to hear from doctors working on multidisciplinary care teams on the pediatric side, through the whole transition process, and onto the adult side. I hope they can create a roadmap for other facilities." — Ryan Piansky

"It was fun to see so many kids and teens on site enjoying themselves in the activities and the mentorship they were having." — Mary Jo Strobel

"We have the new EGPA toolkit resource that we launched this week in collaboration with the Vasculitis Foundation. You can find that resource on APFED.org." — Mary Jo Strobel

"It's exciting that we were able to highlight some of these more rare disease subsets. In the virtual format, where we're able to reach so many more people, we talked about EGPA, HES, eosinophilic asthma, and even eosinophilic fasciitis." — Ryan Piansky

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED's Health Sciences Advisory Council, have a conversation about artificial intelligence (AI) and patient education, with guest Dr. Corey Ketchem, a third-year Gastroenterology Fellow at the University of Pennsylvania.

In this episode, Ryan, Holly, and Dr. Ketchem discuss Dr. Ketchem's interests, and his research into using an AI chatbot to provide patient education on eosinophilic gastrointestinal diseases. He shares, in broad terms, the methodology and conclusion of the research and what current and future research he is pursuing about using artificial intelligence to improve patient education and care.

Listen to this episode to learn about the current limitations and potential future benefits of using AI to help patients.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[1:17] Ryan Piansky and co-host Holly Knotowicz introduce the topic, artificial intelligence and patient education, and their guest, Dr. Corey Ketchem, a third-year Gastroenterology Fellow at the University of Pennsylvania.

[1:30] Dr. Corey Ketchem has an interest in allergic inflammation of the gastrointestinal tract, particularly eosinophilic gastrointestinal diseases (EGIDs), as well as artificial intelligence and epidemiologic studies.

[2:01] Dr. Ketchem did his residency at the University of Pennsylvania following medical school. There he met Dr. Evan Dellon, a world expert in EoE. Dr. Dellon became a mentor to Dr. Ketchem.

[2:24] As Dr. Ketchem learned more about EoE, he was fascinated by the many unknowns and opportunities for discovery within the eosinophilic GI field. He wanted to make an impact on patient care.

[2:51] Under Dr. Dellon's mentorship, he did epidemiologic studies. Seeking specialized training, he ended up at the University of Pennsylvania where he is getting rigorous training in epidemiology to study EGIDs.

[3:18] As ChatGPT was gaining its buzz, Dr. Ketchem saw a lot of clinical applicability. He views AI as an asset in epidemiology and hopes to use it to accelerate his research.

[4:30] AI usually references using computers to mimic human abilities, estimate decisions, or predict outcomes. An example is Natural Language Processing (NLP), to analyze and understand human language. Large Language Models (LLM) use NLP.

[5:08] ChatGPT is based on a LLM. LLMs use NLP techniques to understand vast amounts of text that they are trained on and generate responses in a chat format.

[5:25] Machine learning is another subset of AI that uses statistical techniques to give computers the ability to learn with the data and predict outcomes.

[5:50] The hope is to use these AI techniques to speed up discovery and also minimize human expense or labor.

[6:28] Dr. Ketchem co-authored a paper in Clinical Gastroenterology and Hepatology about an AI chatbot and EoE. He had been inspired by a cardiology paper on whether ChatGPT would create accurate, appropriate answers about cardiology disease health.

[7:19] Dr. Ketchem wondered if ChatGPT could be applied to EoE education. He discussed it with Dr. Dellon and Dr. Krystle Lynch, Dr. Ketchem's mentor at the University of Pennsylvania, and with Dr. Joy Chang, at the University of Michigan. They came up with a study design.

[8:06] The study asked ChatGPT questions about EoE, focusing on patient education and the therapeutics, and seeing if it gave accurate responses or not.

[8:45] The four doctors developed 40 questions that they gave ChatGPT as prompts and evaluated the responses. They proposed the questions in two ways: each question in an individual chat and 40 questions in a single chat.

[9:41] Analyzing the responses, the study demonstrated that ChatGPT responded with multiple inaccuracies to questions about EoE on general topics, complications, and management. Over half of the responses mixed correct and incorrect information.

[10:09] To evaluate the readability of the responses, the doctors used the Flesch-Kincaid reading ease tool. To understand the output from ChatGPT one would need high school and two years of college. That poses a potential health literacy barrier.

[11:40] The questions ranged from general: "What is eosinophilic esophagitis?", to complications: "What is a food impaction?", "What is a stricture?", to therapeutics: "What are steroids for eosinophilic esophagitis?", "Can I use a proton pump inhibitor for EoE?"

[12:15] It was not clear where ChatGPT pulled data from to respond to the questions. The data it was trained on was known to be in texts over a year old. Newer data may not have been accessible to ChatGPT.

[13:29] The doctors asked about things that were common knowledge in the eosinophilic GI realm, like dupilumab, and ChatGPT didn't know much about it because it was a newer treatment option for EoE at the time of the study.

[13:42] The doctors scored the answers on their scientific accuracy and patient educational value. Simple questions got good responses. For questions about therapies and complications, "it wasn't doing well." They identified limitations to the study.

[14:14] The doctors asked ChatGPT if EoE is associated with cancer. From their best epidemiologic knowledge, the doctors don't think that it is. ChatGPT falsely associated EoE with esophageal adenocarcinoma.

[14:34] ChatGPT also associated EoE with Barrett's esophagus. To the doctors' best epidemiologic data, they are not sure that there's a connection.

[15:02] When the doctors asked the questions in individual chats, they asked ChatGPT for medical literature references for the information. It didn't provide accurate references. Titles and authors were often incorrect and links often didn't work.

[15:36] The incorrect references were a signal that ChatGPT wasn't ready to answer complex medical questions. In the more updated versions of ChatGPT, instead of giving references, it says you should consult your doctor, which is the right thing to do.

[15:56] The researchers concluded that implementing this technology requires clinical oversight; it's a tool that should be used with caution for patients in educating themselves and also from the perspective of a physician who is not an expert in EoE.

[16:29] Dr. Ketchem had been surprised by how long the responses were. He was expecting paragraphs but got pages and pages. He was also surprised by how quickly people were starting to use ChatGPT in other aspects of gastroenterology.

[16:57] While Dr. Ketchem and his team were writing the paper, another study came out about gastroesophageal reflux (GERD) that was somewhat similar to what Dr. Ketchem proposed for EoE. There is rapidly much being published about ChatGPT.

[17:14] Although the results were imperfect, there is potential applicability in patient-facing chats in the future for patient education but not yet there "for prime time."

[18:33] These chats need to be transparent about where they're getting data, especially in the medical field.

[18:41] There will always be a role for people in medicine. You can't replace a face-to-face connection with a nurse or a physician with a chat bot.

[19:11] Dr. Ketchem says everyone needs to be careful about using AI tools. He advises patients to always discuss any medical questions with their physician. AI tools are not yet able to provide accurate medical information all the time.

[19:50] Ryan reminds listeners that this podcast is for educational purposes. Always consult your physician before making any changes to your healthcare. If you ask ChatGPT, also consult with your doctor before making any changes to your healthcare.

[20:31] One of the problems with large language models is the potential for inaccuracy. Dr. Ketchem's gold standard is the medical literature and you don't know where the large language models are getting their information.

[21:04] Future benefits may include helping patients get answers quicker and becoming more educated. Dr. Ketchem hopes we will get to a point where we can trust these technologies and implement them safely.

[21:37] Government organizations like the National Institutes of Health (NIH) and the U.S. Food & Drug Administration (FDA) are bringing together experts to think about large language models and create regulatory frameworks for their use in healthcare. Dr. Ketchem tells how HIPAA (Health Insurance Portability and Accountability Act) rules are followed to protect patients.

[23:29] Dr. Ketchem sees potential in machine learning to predict which therapies an EoE patient will respond to. AI is also used in colonoscopies to identify hard-to-see polyps. It might be useful in endoscopies to see changes in the esophagus from EoE.

[24:35] AI image recognition could also be applied in pathology. Dr. Ketchem is interested in trying to apply it to work he wants to do in the long term. People are working with pathology specimens to automate the counting of eosinophils. Dr. Ketchem discusses the potential use of AI for epidemiology in pathology.

[25:43] Dr. Ketchem and Holly discuss the potential for using AI chatbots in medical screening questionnaires. There will always need to be a human element.

[27:57] Dr Ketchem speaks to the potential future development of educational videos prepared by AI. It is a complex scenario that would require a lot of training. If a camera is added, AI could analyze where patients are having problems in taking medications.

[29:55] Dr. Ketchem says there are many moving parts in healthcare and many stakeholders, making it difficult to implement AI. It could be used in many aspects, but its use must be safe. Dr. Ketchem thinks it will soon be useful in medical imaging.

[30:57] In the next decade, AI may be used in drug discovery, clinical decision-making, and healthcare administrative operations. The goal is to improve the care for the patient. Personalized care would be an aspirational goal of using artificial intelligence.

[31:29] Dr. Ketchem heard of a computer scientist at a government meeting suggesting a far-future scenario of doctors having digital versions of patients to test the patient's reaction to a specific medication, based on comorbidities and other medications in use.

[32:30] Holly thanks Dr. Ketchem for sharing his research findings to help others.

[32:40] Dr. Ketchem's last words: "The future is bright. There are many open avenues to apply these technologies to eosinophilic GI diseases – in diagnostic support, personalizing treatment, and predictive modeling – to make patient care better."

[33:10] Dr Ketchem is building a research program to use epidemiologic training with artificial intelligence. He hopes to find how to take text from histology or pathology and apply epidemiologic methods, to build a cohort of patients to study diseases faster.

[34:03] Dr. Ketchem hopes to use AI to help predict patient outcomes, regarding who will respond to what therapy and who will have more complications from their disease; those are things he is interested in. There are so many unanswered questions.

[34:30] After Dr. Ketchem finishes his fellowship, he hopes to be an independent investigator, being curious and answering these questions somewhere. If you know of such a job, please let Dr. Ketchem know!

[34:53] To learn more about Dr. Ketchem's research, please check out the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, visit apfed.org/egids. If you're looking for a specialist who treats eosinophilic disorders, use APFED's Specialist Finder at apfed.org/specialist.

[35:17] To connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.

[35:26] Ryan thanks Dr. Corey Ketchem for joining us today. Holly thanks APFED's Education Partners, GSK, Sanofi, and Regeneron, linked below, for supporting this episode.

Mentioned in This Episode:

Corey Ketchem, M.D., M.S.

Penn Medicine

Abstract of paper in Clinical Gastroenterology and Hepatology: "Artificial Intelligence Chatbot Shows Multiple Inaccuracies When Responding to Questions About Eosinophilic Esophagitis"
Medscape article about the paper in Clinical Gastroenterology and Hepatology: "ChatGPT Gives Incorrect Answers About Eosinophilic Esophagitis", by Carolyn Crist

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/egids

apfed.org/specialist

apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of GSK, Sanofi, and Regeneron.

Tweetables:

"We ultimately came to the conclusion that implementing this technology requires clinical oversight and it's a tool that should be used with caution." — Corey Ketchem, M.D., M.S.

"There will always be a role for people in medicine. You can't replace a face-to-face connection with a chat. That's just not going to work." — Corey Ketchem, M.D., M.S.

"There will always need to be a human element to it. The goal is to make [AI for healthcare] as good as it can be. We're certainly not there yet, but it's probably closer to being here than we think." — Corey Ketchem, M.D., M.S.

Bio:

Dr. Corey J. Ketchem, MD is a rising third-year gastroenterology fellow at the University of Pennsylvania, driven by a profound interest in allergic inflammation of the gastrointestinal tract, particularly eosinophilic gastrointestinal diseases (EGIDs). He has acquired a unique skillset in clinical epidemiology and biostatistics that equip him with the necessary tools to conduct rigorous research studies, culminating in a Master of Science in Clinical Epidemiology (MSCE) upon fellowship completion. Dr. Ketchem's passion for EGIDs has spurred a series of epidemiologic investigations focusing on both eosinophilic esophagitis (EoE) and non-esophageal EGIDs, yielding numerous publications in high-quality gastroenterology journals and earning him recognition through various research awards. Moreover, his academic path has included the incorporation of artificial intelligence into his research endeavors, aiming to enhance patient care and facilitate epidemiologic studies. Dr. Ketchem's trajectory is set toward becoming an independent researcher, dedicated to employing high-quality epidemiologic approaches to uncover pivotal insights into EGIDs, advance clinical knowledge, and optimize therapeutic strategies for patients.

Bio: Penn Medicine Division of Gastroenterology and Hepatology Fellows

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED's Health Sciences Advisory Council, have a conversation about food-induced immediate response in eosinophilic esophagitis (EoE), with guest Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine, and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program.

In this episode, Ryan, Holly, and Dr. Nirmala Gonsalves discuss food-induced immediate response in EoE, recent and ongoing research into FIRE, and advice for providers.

Listen to this episode to learn about food-induced immediate response (FIRE).

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Ryan Piansky and co-host Holly Knotowicz introduce the topic of today's episode, food-induced immediate response in eosinophilic esophagitis, and their guest, Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine.

[1:38] Dr. Gonsalves is the Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. Her research and clinical career are dedicated to improving the care of patients with eosinophilic gastrointestinal diseases, or EGIDs.

[1:53] Dr. Gonsalves's extensive clinical experiences with EGIDs have shaped her research goals, which include identifying novel treatments and determining the best methods to measure disease activity.

[2:20] Dr. Nirmala Gonsalves has been at Northwestern for 25 years and has been involved in the EGID and EoE space for the last 20 years. Dr. Gonsalves met Ryan during her first introduction to APFED when Ryan was "much, much younger," so she is pleased to see him co-hosting this podcast.

[2:56] Within Northwestern Medicine, Dr. Gonsalves is part of the Esophageal Group. Within the Esophageal Group, she co-directs the Eosinophilic GI Disorders Program with Dr. Ikuo Hirano. Working in the EGID space for the last 20 years has been incredibly rewarding.

[3:11] Dr. Gonsalves feels lucky to be a part of The International Gastrointestinal Eosinophil Researchers (TIGERS) and the Consortium of Eosinophilic and Gastrointestinal Disease Researchers (CEGIR).

[3:26] Dr. Gonsalves has focused her clinical career on understanding eosinophilic GI disorders, helping to get better diagnoses, increased awareness, and better treatments, and improving the quality of life for patients with these conditions.

[4:19] Dr. Gonsalves describes the study of food-induced immediate response in eosinophilic esophagitis (FIRE). In 2017, gastroenterologist Dr. Alex Straumann, and allergist Dr. Mark Holbreich, both very familiar with EGID, started a multi-center effort and project, working with many physicians and patients to define this condition of FIRE.

[4:45] The symptoms of FIRE are very different from what we typically think about as EoE symptoms. The classic symptoms of EoE in adults are dysphagia (difficulty swallowing), or food impaction (a bolus of food stuck in the esophagus).

[5:37] This team of researchers in Switzerland, Northwestern, Indiana, North Carolina, Colorado, and Mt. Sinai, to name a few centers, noticed patients describing different symptoms; a more immediate response that was happening in their esophagus when they were exposed to certain specific foods, like beer or wine and avocado or banana.

[6:19] Patients described an immediate reaction in their esophagus, occurring any time from seconds to minutes after ingesting that food, as a painful, squeezing sensation, and a narrowing in their esophagus that was temporally related to these foods.

[6:42] It started to increase the researchers' awareness that this symptom was different from the classic dysphagia that adults and older children typically present with.

[7:12] In the study, they did a two-phased investigation. First, they sent a survey to physicians used to treating EoE, to understand what their experience was about these symptoms. Based on that knowledge, they convened twice to develop a questionnaire for patients, to understand how common this is in the patient population.

[7:38] The response was 47 physicians (an 82% response rate). They sent the patient survey to the EoE Swiss cohort and the response was 239 patients (a 65% response rate.)

[7:58] Of the physicians, 90% reported patients reporting these symptoms. The physicians estimated this to occur in 5 to 20% of EoE patients. Looking at the patients who had FIRE with EoE, vs. EoE without FIRE, the FIRE patients were younger and more likely to have other atopic conditions like rhinitis, asthma, and dermatitis.

[8:42] Patients with FIRE were more likely to have had a prior food impaction, a longer duration of disease, and a longer time to symptom presentation. Those were the risk factors in the patients.

[8:56] In the patient questionnaire, 40% of the EoE patients surveyed reported that they had symptoms of FIRE.

[9:29] Most of the patients in the study were adult patients. Looking at the average age of the EoE cohort vs. the EoE with FIRE cohort, the EoE with FIRE patients tended to be younger. Dr. Gonsalves suspects that patients are experiencing FIRE earlier on, but they don't know what is occurring.

[9:56] Dr. Gonsalves thinks that is where the investigation is going: to understand when FIRE is happening. The symptoms are quite different than the typical first EoE symptom when something is going down slower or getting caught in the esophagus.

[10:27] As far as whether FIRE is experienced by other patients besides EoE patients, the survey team only noticed FIRE in EoE patients. A follow-up study could look at the control cohort or the regular reflux cohort. Patients don't express these types of symptoms, other than EoE patients, so it seems unique to EoE patients.

[10:53] When the team talked about and tried to understand more about the background of FIRE, and the risk factors, they wondered if it was similar to oral pollen syndrome, with a more immediate reaction in the esophagus.

[11:49] With adults, certain liquors, wines, beers, avocados, and bananas stand out among triggers. The symptoms are so significant that patients would say on a scale of one to ten, it's a seven intensity. It's fairly immediate, within seconds to minutes, with a duration of minutes to several hours.

[12:18] A lot of times, patients compensate by not eating those specific foods because they don't want that condition to happen. For some patients, it's a profound spasm-type squeezing in their chest that will occur when this happens.

[13:44] Dr. Gonsalves says many patients will confuse FIRE with an anaphylactic reaction; it's not clear what it is. The multidisciplinary group of physicians that worked on this study included allergists and gastroenterologists all tried to come up with the mechanism that causes FIRE. It does not appear to be an anaphylactic reaction.

[14:13] When FIRE occurs, the doctors of the multidisciplinary group ask their patients to seek care from their allergist and discuss this with their allergist, to get more testing and understanding of what's occurring. They want to be mindful if there's any risk of anaphylaxis, but it does not appear that the FIRE condition is related to anaphylaxis.

[14:55] Dr. Gonsalves says we're at the very early stages of understanding the mechanisms of why FIRE is occurring. The first step was to increase awareness, define FIRE, understand it, and separate it from both EoE symptoms and anaphylaxis. We don't yet understand the mechanisms.

[15:18] At Northwestern, they are looking at a study to define FIRE better. They look to see if there is IgE sensitivity to these foods. If there are not, they look to see if there are any nanometric changes in the esophagus when these foods are in the esophagus. Are people having the esophageal spasms that equate to the symptoms they describe?

[16:03] That study is to understand more about the mechanisms causing FIRE. What happens to the FIRE symptoms? Once a physician treats a patient with EoE, the FIRE gets better. Patients sometimes can reintroduce the foods when their EoE is quiet. There is a short window of time to identify FIRE in a patient before treatment.

[16:43] Early identification and early treatment is the mantra. They don't want to delay treatment in any patient. When the EoE goes in remission from treatment, the FIRE symptoms tend to go into remission, also.

[17:01] This is unpublished data and research they are working on. Hopefully, they will learn more and be able to share it with APFED. These are their speculations.

[18:17] At Northwestern, they are known for dietary therapy. Their patients gravitate toward diet therapy. The foods involved in FIRE symptoms are not big EoE triggers. In dietary therapy, when foods are reintroduced, patients describe recurrent dysphagia, heartburn, and EoE-type symptoms.

[18:56] Patients having foods reintroduced don't typically describe this immediate reaction where their esophagus is spasming, contracting, and feeling very tight right after. That's a very different symptom.

[19:17] For the patients studied, the foods most consistently triggering FIRE symptoms were fruits, wines, vegetables, honey, beers, and vinegar. The foods driving FIRE tend to be the foods driving oral allergy but the symptoms are different; no mouth, tongue, or lip itching, but a squeezing sensation in the esophagus.

[20:29] Dr. Gonsalves says they have not identified long-term consequences of FIRE. They are very early in the stages of understanding and following it. The long-term consequences come from untreated EoE. Dr. Gonsalves lists some consequences of untreated EoE, including worsening scarring, strictures, and dysphagia.

[21:08] Dr. Gonsalves speculates and wonders if physicians were sometimes confused between dysphagia, oral-pollen allergy symptoms, and FIRE symptoms, without it being clear what the patient was experiencing, leading to a delay in diagnosis.

[21:52] Dr. Gonsalves says having patients with FIRE symptoms highlights the importance of having a multidisciplinary program and having a good collaboration with allergists, dieticians, and GI health psychologists to address food fear and anxiety, pathologists, and pediatricians. It's important to have conversations with colleagues.

[22:31] Dr. Gonsalves says there's no test for FIRE, which is why we're doing this research project; understanding what is behind FIRE, now that we know FIRE exists, we have a description, and we know how prevalent it is. We need to look at the patient and look for contractions of the esophagus upon exposure to the food with manometry.

[23:18] Manometry is a tube with pressure sensors used for measuring esophageal pressure and the strength of contractions. Patients with EoE have various abnormalities in their esophageal contractions. To study FIRE, with the manometry tube in place, the patient will eat the trigger food or drink to see if there are heightened contractions.

[25:24] Manometry is not an easy test. It is done when necessary to understand esophageal motility and function. It's not easy to recruit for these tests and there are not many candidates as the symptoms go away quickly with treatment. The technicians are skilled in doing the testing. It's done routinely and safely.

[26:47] Dietary, pharmacological, steroidal, and biological treatments can be effective in treating EoE symptoms. When EoE symptoms stop, FIRE typically stops. There has not been a study to document this, but it has been observed clinically. After a patient has been treated and then is tested for esophageal motility, FIRE does not typically recur.

[28:05] Dr. Gonsalves shares her suspicion that there is something related to esophageal inflammation that triggers this type of response and a hypercontractile state in that setting. Ryan reminds listeners that this podcast is not medical advice; always consult with your physician before making any changes or trying new treatment options.

[29:40] When a provider talks to a patient, they might ask about dysphagia if they are making modifications for swallowing, and how they swallow something dry or dense. Can they perceive it going slowly down their esophagus? Are they taking in lots of liquid to help this food pass? Are they chewing excessively? Are they avoiding foods or pills?

[30:40] These questions help providers understand if there is disease activity and if they are not symptomatic because of avoiding these types of foods. Those are EoE questions.

[30:52] Asking about FIRE symptoms or oral pollen allergy symptoms, the provider will go down a list of allergic history questions about allergic rhinitis, asthma, eczema, and anaphylactic symptoms. Also, mouth itching, lip-tingling, or throat itching when they eat certain foods.

[31:20] After they eat these foods, do they ever experience an immediate sensation of narrowing or tightening or spasm in the esophagus, or burning pain that happens secondary to the dysphagia? The important thing is to separate the transit dysphagia of things moving slower down the esophagus from this perception of squeezing pain.

[32:18] Holly thanks Dr. Gonsalves for sharing her expertise to help others.

[32:37] Dr. Gonsalves's last word is that this condition exists. Providers, ask your patients about them. It was remarkable to Dr. Gonsalves how profound the symptoms were that patients described to the point where they avoided these foods and were scared of these foods.

[32:56] Interestingly, FIRE is very different from EoE symptoms. It does exist. Ask about it! That will help tease out the reactions that are occurring. Especially, understand that when going on a food elimination diet, these are separate from the EoE triggers.

[33:18] If you identify these symptoms, or oral pollen symptoms, or coexisting atopic conditions, partner with an allergist so that we understand the mechanisms behind this and make sure that nobody is at risk for anaphylaxis from these types of things.

[33:49] Dr. Gonsalves is pleased to partner with TIGERS and to be on a site for the CEGIR Group. Dr. Gonsalves heads up the development of the Non-EoE Consensus Guidelines, to understand what goes into a diagnosis of Non-EoE EGID and what that entails. She continues to research dietary therapy and making it better for patients.

[34:31] She works to understand different metrics to measure activity in the esophagus, histologically as well as motility-based, and the genetic changes that occur with different treatments, and doing all this, partnered with an amazing group of collaborators through the CEGIR Consortium and others to improve patients' quality of life.

[35:01] Dr. Gonsalves feels lucky that 20-something years ago, she bumped into the leaders of APFED and other patient advocacy groups and shared their experience with Northwestern. She is grateful for the privilege of working with all the wonderful physicians and patients who help us learn about these conditions.

[35:46] To learn more about Dr. Gonsalves's research, please check out the links in the show notes. To learn more about eosinophilic gastrointestinal disorders, visit apfed.org/egids. If you're looking for a specialist who treats eosinophilic disorders, use APFED's specialist finder at apfed.org/specialist.

[36:10] To connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at apfed.org/connections.

[36:21] Ryan thanks Dr. Nirmala Gonsalves for joining us today. Holly thanks APFED's Education Partners, AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron, linked below, for supporting this episode.

Mentioned in This Episode:

Nirmala Gonsalves, MD

Northwestern Medicine Feinberg School of Medicine

Ikuo Hirano, MD

Publication discussed: Food-induced immediate response of the esophagus — A newly identified syndrome in patients with eosinophilic esophagitis
American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/egids

apfed.org/specialist

apfed.org/connections

Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron.

Tweetables:

"Working in the EGID space for the last 20 years; it's been incredibly rewarding. I've been lucky enough to be invited to be a part of The International Gastrointestinal Eosinophil Researchers (TIGERS)." — Nirmala Gonsalves, M.D.

"Our patients will describe it; it's a profound spasm-type squeezing in their chest that will occur when FIRE happens." — Nirmala Gonsalves, M.D.

"There's no clear test yet for FIRE, which is why we're doing this research project; really understanding what is behind FIRE, now that we know FIRE exists, we have a description of it and we know how prevalent it is." — Nirmala Gonsalves, M.D.

Bio:

Dr. Gonsalves is a Professor of Medicine in the Division of Gastroenterology & Hepatology at Northwestern University Feinberg School of Medicine and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. She completed her undergraduate training at the University of Notre Dame, medical school at Robert Wood Johnson Medical School in New Jersey, and her internship, residency, and fellowship at Northwestern, where she has stayed on as an attending physician since 2005. In this role, she has co-authored more than 60 manuscripts and presented at more than 40 national or international meetings that focus on eosinophilic gastrointestinal diseases (EGIDs). Her research and clinical career is dedicated to improving the care of patients with these rare disorders. Her extensive clinical experiences with EGIDs have shaped the overarching research goals that include identifying novel treatments and determining the best methods to measure disease activity. She is a site investigator for the NIH-funded U54 Grant Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR, PI-Rothenberg) and Core Lead for the Northwestern Biorepository for an NIH sponsored PPG Grant on Esophageal Biomechanics (PI-Pandolfino).

Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED's Health Sciences Advisory Council, have a conversation about the Spoon Theory.

In this episode, Ryan and Holly discuss the origin of the Spoon Theory, their experiences, and what the Spoon Theory means in their lives.

Listen to this episode to learn how the Spoon Theory could work for you.

Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own.

Key Takeaways:

[:50] Ryan Piansky and co-host Holly Knotowicz introduce the topic of today's episode, the Spoon Theory. Both Ryan and Holly will discuss their experiences.

[1:39] About ten years ago, fatigue became a challenge for Holly. As she researched options for managing her fatigue, Holly came across the Spoon Theory, a tool she uses and teaches now in conferences and talks.

[2:05] The Spoon Theory is a story written and copyrighted by Christine Miserandino in 2003 to help explain how chronic illness affects the amount of physical and or mental energy a person has available for daily activities and tasks and how it can be limited.

[2:28] About a year ago, in a Community Conversations episode of APFED's podcast, guest Ashley Spencer discussed EGPA. Ashley and Holly brought up the Spoon Theory. Ryan calls the Spoon Theory a digestible way to convey the effect of living with fatigue from chronic illness.

[2:46] Holly shared how Christine Miserandino developed the Spoon Theory while at brunch with a friend. Her friend asked Christine how she was coping living with lupus. Christine grabbed all the spoons from the table and explained that each task throughout the day costs a spoon.

[3:21] Christine asked her friend to walk through every activity of her morning. As her friend started talking about the different things she does, Christine would remove a spoon from her pile of 12 spoons. When dinnertime came, there was only one spoon. That limited her choices for dinner; this was long before dinner delivery services.

[4:19] Through this exercise, Christine's friend learned how chronic illnesses use up a lot of energy just from existing. For listeners who want to read more, please check out Christines' website, ButYouDontLookSick.com, linked in the show notes.

[4:33] Ryan sees the Spoon Theory as an easy way to convey what living with a chronic illness is like. He asks, why is it 12 spoons? Does everyone have the same number of spoons? In interviews, Christine has said 12 was the number of spoons on the table but it is a good representation of the limited supply people with chronic illnesses have.

[5:07] According to the theory, healthy people have an "unlimited" supply of spoons, while people with chronic illnesses have to ration their spoons to get through the day. Everybody's number is slightly different but the theory uses 12.

[5:22] Ryan shared a story about seeing his sister during the holidays. She doesn't have a chronic illness. She seems to have unlimited spoons for activities she plans, while Ryan may run out of spoons around 10:00 a.m.

[5:46] Ryan asks if it is always the same number of spoons per day. Holly says your baseline number is about 12 spoons. It can vary if you borrowed spoons from the day before or if you have spoons left over from the day before. Some say on a good day, you might wake up with 20 spoons but a bad day would start with 12 spoons.

[6:34] Holly explains about borrowing spoons. If you run out of spoons on one day, before you finish your activities, you might borrow spoons from the next day by canceling a planned activity for the next day. Holly also explains it to people as a lending library.

[7:49] When Ryan was young, he attended the APFED patient education conference every year. He recommends it. His parents warned him not to overextend himself but to take it easy and rest during the day. At every conference, he just kept going for 12-plus hours. When he got home, he would crash for a day. He had used up all his spoons!

[8:36] Ryan asks what happens when you run out of spoons. Holly shares that when you run out of spoons, your body might have a flare-up, or be more susceptible to getting sick because you've become rundown.

[9:10] It can also lead to comparison with others and feeling sad or anxious because you don't have the energy that healthy people around you have. For the average person with chronic illness, cooking from scratch from a recipe could be three or four spoons.

[9:51] For someone with a specialized diet, that could double. You're not just reading the recipe, you have to think about substitutions and go buy them. You have to know if the recipe will taste good with substitutions. It's mentally exhausting to follow recipes for specialized diets.

[11:04] Holly is an extrovert but sometimes being with people can take too many of her spoons, so she carefully plans her socializing. Being with good friends might take three spoons. Presenting at a conference takes more spoons. Walking a dog could take two spoons. Taking medication or brushing her teeth could take one spoon.

[12:10] For children with chronic illness, going to school might take four of their spoons. Playing soccer might take five spoons, so at times they don't have the energy. This can result in absences from school because they want to have typical social lives but don't have the energy and reserves to do so. It's the same for adults but it's a hard fact for children.

[12:53] Ryan was diagnosed with EoE at age two. Ryan thinks back to high school. He woke up at 6:15 every day to get to high school before 8:00. Getting to school on time probably took most of his spoons. The rest of the day was exhausting. He never did any extracurriculars in high school. By 3:00, he was down for the count.

[13:50] If Ryan's friends wanted to spontaneously do something after school, he often had to refuse. He needed a few days to prepare physically and mentally for extra activities. Having something sprung on him at the last minute drained more of his spoons. He would like to have had the Spoon Theory to explain it to his friends.

[14:52] Holly says there is a mental aspect to having a chronic illness. You have to think about things in advance, especially people living with eosinophilic diseases and/or those who have specialized diets. To consider going out to a meal, you might have to research a restaurant in advance or even talk to the chef. Thinking about and making these phone calls requires spoons.

[16:06] Recently Ryan planned to go out with friends. After they picked a restaurant and Ryan chose what he would order, the friends decided to try a different restaurant. Ryan had to check the menus of six other restaurants before they settled on the original one. The extra effort depleted Ryan's energy and he just sat quietly during dinner.

[19:14] Ryan didn't push himself to be social because it would have eaten into his reserve spoons for the following day. As it was, he slept in the next day.

[20:07] Ryan has had days where he has had to use up the next day's spoons, and then had the next day be equally busy. 

[20:28] The Spoon Theory can be applied to different chronic illnesses. Most of them are invisible illnesses. It makes sense that Christine's website is named ButYouDontLookSick.com.

[21:29] Holly loves that the Spoon Theory provides a visual representation of how our energy works and how we can manage it. Because many chronic illnesses are invisible, people don't always understand why we have to cancel, abort, or decline plans. We often have to prioritize activities to protect our health. It's a different standard.

[22:10] We prioritize activities to protect our health and how we feel. Holly uses the Spoon Theory to explain why she declines plans in advance when she has too many things scheduled. She wouldn't be her best self. Holly rarely schedules anything for after an eight-hour workday.

[22:55] Holly thinks of herself as a dynamic person who brings a lot to the table. She doesn't want to be in an activity where she can't participate fully. It reflects on how much her diagnosis seeps into her life. She doesn't like to share her EoE with everybody, even though many people in her life know it and she does this podcast!

[23:25] Over the last six months, Holly's goal has been to map out her week to keep her energy consistent. She plans when to work out in the morning, when to see patients, and when to fly for international conferences. She gives herself a rest day after the flight or she stumbles and mumbles during the presentation. This means she often declines dinner invitations.

[24:45] Holly will accept invitations to destination weddings but then will not book anything extra for a week afterward or she knows she will get sick. It's a pattern.

[25:28] Ryan says sometimes people can tell when he's not at his best, but for the most part, he looks relatively healthy. He's up and about, at meetings and conferences but it's such a limited amount of energy that he has available. It's hard for people with unlimited spoons to gauge how many spoons Ryan has left.

[25:57] Holly often presents at medical conferences about feeding therapy, eosinophilic diseases, food allergies, FPIES, and tube feeding, and she incorporates the Spoon Theory into some of her talks. She has spoons at the podium and starts dropping them as she goes, holding one or none by the end. That's when questions come.

[27:25] Holly likes people to know that when they're working with kids with chronic illness, it's important to pace out their therapy. For example, give a patient two things to work on until the next time, not ten, to be successful.

[28:50] Ryan clusters his multiple specialist annual visits at the start of the fall semester and at the beginning of the spring semester. That means he misses some classes and lectures at the beginning of each semester. It is draining. Tests eat up half his spoons for the day.

[30:35] Holly shares how applying the Spoon Theory impacts managing her health. The Spoon Theory helps her create and maintain boundaries. She adamantly tries to stick to a schedule that rarely depletes her spoons per day. It's still a work in progress. Holly has a therapist who is helping her work on it.

[31:08] Holly schedules social things on days when she has little to no other obligations. She has to maintain that schedule. She has good days and sometimes great weeks which leads her to add more to her plate, but then she runs out of spoons more quickly because she's borrowing from the next day. Eventually, she has no spoons to borrow.

[31:42] Holly went on vacation for her birthday and then last week she was doing great, taking some urgent referrals for babies. This week, she had to cancel things. She is learning that she needs to schedule time to recharge and rest even on good days.

[32:26] Holly has learned there are ways to increase your number of spoons. The most important things are to be compliant with treatment and follow a specific diet (if recommended). A lot of chronic illnesses have a specific researched diet to help you stay healthy. When you have a cheat day, you're harming yourself by taking spoons from your next day.

[33:31] Working out helps with anxiety and depression. There are physical and mental health benefits. Holly started tracking over the last eight months how many spoons working out earned for her, compared to the spoon it took from her. She finds that it adds three to five spoons to her daily reserve. The endorphins boost her energy.

[34:14] Ryan agrees. He goes to the gym at least twice a week. If he misses a day, he feels worse. He goes out for a walk on days he's not going to the gym just to get moving and he feels better after that. Being stuck inside all day is mentally draining as well. Going for a walk takes extra effort but it does feel better.

[35:32] Ryan and his mother have similar food allergy issues so they both carefully stick to their diet. If they vary their diets on vacation, even without eating triggers or allergens, they feel physically bad for a few days until they get back to their usual diets.

[36:28] Once Holly learned about this theory and was making new contracts, she realized that there may be times when she might have to cancel and reschedule. When she sends an email about an engagement, she includes an article on the Spoon Theory and describes what she is struggling with, in case she has to reschedule.

[37:42] The Spoon Theory is a good way to describe to friends or family why the person with the chronic illness isn't hosting the holiday but may need to go to a room and rest at the host's home. It's a tool to inform loved ones and friends so they can be supportive. It's a different way to share our struggles with our chronic illness.

[38:27] When Ryan meets people and tells them about his health issues, he might say he has food allergies but then also explain how his conditions lead to a limited supply of energy, and then tell about the Spoon Theory. It's a helpful tool we can all use, going forward.

[39:08] Our listeners can learn more about the Spoon Theory by going to Christine Miserandino's website, ButYouDontLookSick.com. 

[39:47] To learn more about eosinophilic disorders, visit APFED.org. If you're looking for a specialist who treats eosinophilic disorders, use APFED's specialist finder at APFED.org/Specialist.

[40:05] To connect with others impacted by eosinophilic diseases, please join APFED's online community on the Inspire Network at APFED.org/Connections.

[40:14] Ryan thanks Holly for sharing information about the Spoon Theory. It means a lot to Holly that we have a platform to reach a lot of people. Holly hopes if you are struggling with a chronic illness that you are not alone and you can use this tool to bring your loved ones and friends closer. Maybe weed out the people who aren't helping.

[41:15] Holly thanks APFED's education partners, AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron, linked below, for supporting this episode.

[41:26] Ryan shares how he just met his partner's friend and by discussing symptoms while picking a place to eat, it turns out she was diagnosed last year with EoE. It's unusual for him to meet people with EoE out there randomly. Ryan is glad to be creating this resource for people. Holly agrees 1,000%.

Mentioned in This Episode:

Christine Miserandino

ButYouDontLookSick.com
American Partnership for Eosinophilic Disorders (APFED)

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Real Talk: Eosinophilic Diseases Podcast

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Education Partners: This episode of APFED's podcast is brought to you thanks to the support of AstraZeneca, Bristol Myers Squibb, GlaxoSmithKline, Sanofi, and Regeneron.

Tweetables:

"Approximately 10 years ago, fatigue became a real challenge for me and as I researched options on how to manage fatigue, I came across the spoon theory, which is what we're going to specifically discuss today." — Holly Knotowicz

"[The Spoon Theory] is such an interesting story and it feels like such an easy way to convey what living with a chronic illness is like." — Ryan Piansky

"We all have people in our lives whom we love dearly, but they could maybe be taking too many of our spoons, so you have to be thoughtful about when you plan time with them." — Holly Knotowicz