In this episode of the Lupus Foundation of America's The Expert Series podcast, we focus on the unique challenges faced by men with lupus, a group that often experiences delayed diagnosis and is impacted by widespread misconceptions. Dr. Lisa Sammaritano shares how lupus symptoms can differ between men and women, and how the disease can affect mental health, identity, and quality of life. We also discuss reproductive health concerns and the evolving landscape of lupus treatment. For men who are newly diagnosed, Dr. Sammaritano offers practical guidance and emphasizes the importance of self-advocacy, education, and seeking support throughout the lupus journey.

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Episode Takeaways:

• Lupus in men is often overlooked, leading to delayed diagnosis and misunderstandings about the disease.
• Symptoms and disease progression can differ in men, making personalized care especially important.
• Self-advocacy and education are key to managing lupus and navigating the healthcare system.
• Mental health and reproductive health concerns are important but often under-addressed aspects of living with lupus.
• Support from peers, family, and friends plays a vital role in coping and improving quality of life.

Related Resources:

• Ask a Lupus Health Educator (LFA)
• Find Support Near You (LFA)
• National Resource Center on Lupus (LFA)
• American College of Rheumatology (ACR)
• Systemic lupus erythematosus and male reproductive health: A systematic review and meta-analysis
• Impact of sex disparities on the clinical manifestations in patients with systemic lupus erythematosus

In this episode of the Lupus Foundation of America's The Expert Series podcast, we explore the intersection of menopause and lupus, highlighting the unique challenges faced by women with lupus during this significant life transition. Dr. Mehret Birru Talabi explains the stages of menopause, its effects on lupus symptoms, and the importance of individualized care. We also cover hormone replacement therapy, lifestyle factors, and the necessity of self-advocacy in managing health during menopause. And although we know it isn’t easy, we also talk about how important it is for women to prioritize their health and seek support from their health care team.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published.

Episode Takeaways:

• Menopause is a significant transition in women's lives. Because most people with lupus are women, most people with lupus will experience this transition.

• Estrogen plays an important role in autoimmune diseases like lupus and fluctuating estrogen levels during menopause can cause both increases and decreases in disease activity.

• Hormone replacement therapy can be an option for women with lupus who are having difficulty managing the symptoms of menopause. There is no one size fits all approach to lupus or menopause and women should discuss all of their options with their health care team.

• Lifestyle factors such as diet and exercise are vital in managing menopause symptoms and lupus. Even small changes can lead to positive results.

• Quality of life matters and women with lupus don’t have to face difficult symptoms of menopause without help. Learning and practicing self-advocacy is essential for women navigating menopause and lupus.

Related Resources:

• Grown Women Talk: Your Guide to Getting and Staying Healthy by Sharon Malone
• Ask a Lupus Health Educator (LFA)
• Find Support Near You (LFA)
• National Resource Center on Lupus (LFA)
• The Expert Series: Lupus and Antiphospholipid Syndrome (LFA)
• The Expert Series: Planning for Pregnancy With Lupus (LFA)

Dr. Cynthia Aranow explains the impact of invisible symptoms in this episode of The Expert Series. Learn the difference between a sign and symptom and how to discuss this topic with your health care team and loved ones.

Review these resources to learn more about this topic:

• https://www.lupus.org/resources/understanding-the-invisible-impact-of-lupus
• https://www.lupus.org/resources/ten-things-to-tell-your-friends-about-lupus
• https://www.lupus.org/resources/learn-ways-to-better-manage-your-lupus
• https://www.lupus.org/resources/financial-assistance

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There is no set definition or timeframe for what counts as lupus remission. It’s no wonder lupus remission is a confusing topic!

This month, Dr. Ronald van Vollenhoven, director of Amsterdam Rheumatology Center in the Netherlands, shares his expertise about lupus remission and inactive lupus and what it means for lupus warriors.

Learn more about lupus remission on our National Resource Center on Lupus

• https://www.lupus.org/resources/lupus-remission
• https://www.lupus.org/resources/patient-physician-dialogue-tool
• https://www.lupus.org/resources/your-genes-and-lupus

In this episode of The Expert Series, we explore the topic of Step Therapy and access to medications. LFA’s Health Education Specialist and Manager Ashley Holden will explain what Step Therapy is and how it can affect people with lupus.

Related resources

• Check out LFA’s Policy Spotlight on Step Therapy
• Medications that treat lupus
• Learn how to self-advocate for yourself or a loved one here

Inflammation from lupus and treatments can affect a person’s bone density, which makes it easier for someone with lupus to break a bone. Dr. Ummara Shah, associate professor in the department of medicine at University of Rochester, discusses why it’s important for people with lupus to care about their bone health.

Dr. Shah also leads clinical trials in lupus and is involved in education of lupus patients at the University of Rochester.

More resources on how to manage bone health:

• https://www.lupus.org/resources/how-lupus-affects-the-bones
• https://www.lupus.org/resources/osteoporosis-management-strategies
• https://www.lupus.org/resources/how-lupus-affects-the-muscles-tendons-and-joints
• https://www.lupus.org/resources/exercising-with-lupus

La discusión de este episodio se impartió en español

Lupe y Lety, especialistas en educación para la salud de la Fundación de Lupus de América (LFA, por sus siglas en inglés), están de vuelta en un nuevo episodio respondiendo preguntas frecuentes sobre el lupus sometidas al equipo de educación para la salud.

Para enviar su propia pregunta a los especialistas en educación de la salud, llena este formulario aquí

Para leer más de las respuestas del blog de las especialistas en educación de la salud hag clic en el enlace, en inglés o en español

Para obtener más información sobre el lupus, visite el NRCL (NRCL en español)

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This episode discussion is conducted in Spanish

Lupus Foundation of America’s Health Education Specialists, Lupe and Lety, are back in a new episode answering frequently asked lupus questions sent to the health education team.

To submit your own question to Health Education Specialists, fill out this form here

To read more from Answers from the Health Education Specialists blog, in English or en Espanol

To learn more about lupus, visit the NRCL (NRCL en Espanol)

In this episode, we focus on eyes and how lupus can affect vision. Dr. Michelle Petri, founder and director of Johns Hopkins Lupus Center, discusses the importance of maintaining eye health when you have lupus, and what to take notice of depending on prescribed medications.

To learn more about lupus and the eyes, review a slideshow here

Related:

To see how lupus affects other parts of the body, check out our resources here

Here’s how medications used to treat lupus can affect you, read more here

Clinical trials make new and better treatments for lupus possible. In this episode of The Expert Series, we sit down and talk with Stephanie Slan, director of IMPACT+ (Improving Minority Participation and Awareness in Clinical Trials) at the Lupus Foundation of America about clinical trial participation. Stephanie also debunks some myths about clinical trials might keep people from wanting to participate.

It’s important for people with lupus to consider participating in these trials to further the advancement of lupus medicines and treatment. This episode breaks down eligibility criteria, what happens during a clinical trial, and what happens with your information after a trial.

Listen to learn more

To learn more about clinical trials, read more about participating in clinical trials here or about frequently asked questions here

If you are interested in participating in research, visit: Lupus.org/RAY

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The Expert Series is happy to have Dr. Bonnie Bermas on our episode about fertility and reproductive health.

Dr. Bermas is an internal medicine professor at UT Southwestern Medical Center focusing on rheumatology disorders. She was the Clinical Director of the Lupus Center and co-director of the Program in pregnancy and rheumatic diseases at Brigham and Women’s  and Harvard Medical School.

Her research interests include pregnancy and rheumatic diseases, systemic lupus erythematosus (SLE) and antiphospholipid syndrome (APS), and rheumatic immune checkpoint inhibitor adverse events.

Below are resources from the National Resource Center on Lupus related to this episode

• Read about Lupus and women’s reproductive health
• Read how six men are living with lupus
• Learn more to  understand the role of how sex and gender play in lupus
• For more information on medication, read about Medications used to treat lupus.

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In this month’s episode, we talk about self-care/self-management with Dr. May Choi. Dr. Choi is a rheumatologist, clinician scientist, and Assistant Professor at the Cumming School of Medicine, University of Calgary.

She has a background and training that include Masters of Public Health in Epidemiology at Harvard University and a lupus fellowship. Dr. Choi is also the Associate Director of MitogenDx Laboratory for novel autoantibody and biomarker testing for autoimmune diseases and the Associate Director of Research for the University of Calgary Lupus Centre of Excellence.

Resources

Here is a resource and worksheet to help find support near you. If you want a list of program and services the Lupus Foundation of America provides, you can find information here.

Read about lupus and depression, and a coping with lupus strategies worksheet.

Depending on where you are in your lupus journey, consider signing up for Strategies to Embracing Living with Lupus Fearlessly, or SELF. This program is self-paced program and can guide someone to reach milestones that can help improve quality of life.

In this month’s episode, we speak with Dr. Jane Salmon about Antiphospholipid Syndrome, or APS. Dr. Salmon is a Collette Kean Research Professor and the director of the Lupus and APS Center of Excellence at the Hospital for Special Surgery.

Dr. Salmon shares her insight on APS how it can affect people with lupus, treatments, and more. Tune in to learn more.

For more information on APS, read here

Learn more about lupus and pregnancy

Learn more on how smoking can affect people with lupus

This episode explores the complex relationship between lupus and fibromyalgia, focusing on definitions, symptoms, overlapping conditions, treatment approaches, mental health implications, cultural influences, lifestyle factors, diagnostic tools, and the importance of patient advocacy. Experts Drs. Peter Izmirly and Kelly Corbitt provide insights into the challenges faced by patients with both conditions and discuss the need for better understanding and treatment options.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published.

Related Resources:

• Strategies for Managing Pain (LFA)
• Staying Active When You Have Lupus (LFA)
• Ask a Lupus Health Educator (LFA)
• FMAware.org (National Fibromyalgia Association resource site mentioned by Dr. Corbitt)

This episode was recorded in Spanish. Este podcast fue grabado en español.

En este episodio, nuestras especialistas en educación para la salud, Leticia Ocaña, MPH, CHES® y Guadalupe Patiño, MPH, hablan sobre los recursos financieros que pueden estar disponibles para las personas con lupus de la comunidad hispana/latina. Los recursos que comparten incluye información que se encuentra en nuestro nuevo artículo que se enfoca en brindar ayuda a la comunidad de lupus y dónde buscarla.

Para obtener más información sobre recursos de asistencia financiera, visite: https://www.lupus.org/es/resources/recursos-de-asistencia-financiera

O aquí en inglés:  https://www.lupus.org/resources/financial-assistance 

For people with lupus, help  may come in many ways – whether it’s through caregivers or organizations. While the Lupus Foundation of America doesn’t provide direct financial assistance, we have complied a resource to help people with lupus find the help they may need to keep up with the cost of their lupus care . Our Health Education Specialists Leticia Ocaña and Guadalupe Patiño share information in this resource for people with lupus, including from the Hispanic/Latino lupus community. 

For more information of financial assistance resource, visit: https://www.lupus.org/es/resources/recursos-de-asistencia-financiera

Or here, in English: https://www.lupus.org/resources/financial-assistance

In this episode of The Expert Series, we welcome Dr. Murray Urowitz, a senior staff rheumatologist at the Toronto Western Hospital and Senior Scientist at the Krembil Research Institute and Schroeder Arthritis Institute. Dr. Urowitz helps us continue the conversation on lupus and heart health. We discuss the difference between coronary artery disease and cardiovascular disease for lupus patients, how these diseases present in both men and women, and more.

Find out more information on heart health and lupus on our National Resource Center on Lupus. | En Español

You may also find our referenced heart episode with Dr. Jim Oates, here

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In this episode of The Expert Series, we are focusing on medication management. LFA talks with Dr. Marcia Mueting, CEO of Nebraska Pharmacists Association, about the importance of connecting with your local pharmacists, what questions to ask, and what to do if you experience side effects from your lupus medications. Dr. Mueting also worked as staff pharmacist, pharmacy manager in a community practice, and helps support her husband, who is a lupus warrior.

For information on lupus medications, check out these resources:

• Treating lupus: A guide
• Understanding your lupus medications
• Treatments being studied for lupus

To learn more on how lupus affects the body, visit: https://www.lupus.org/resources/how-lupus-affects-the-body

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In this episode of The Expert Series, we talk with Dr. Anca Askanase, founder and clinical director of Columbia University’s Lupus Center, about winter wellness. We discuss how to stay healthy during cold and flu season, the importance of getting a flu shot every year, and more.

To learn more about flu and vaccines for people with lupus, check out our resources on our Resource Center:

Get your annual flu shot

Lupus and Vaccines

Be sure to also check out our blog discussing how to stay safe and stress-free this holiday season.

In honor of National Caregivers Month, we speak with Grace Whiting, president and CEO of The National Alliance for Caregiving, on why we should give back to those who take care of us. In this episode we discuss the caregiver role, tips to stay healthy, resources, and more.

For more information on caregiving, check out our dedicated page for caregivers.

In this episode of The Expert Series, LFA’s Senior Communication Strategist Duane Peters talks with Melanie Betz of University of Chicago. Betz, a member of the American Kidney Fund dietician advisory group, addresses the role of diet for people with Lupus Nephritis and kidney-friendly recipes.

For information on Lupus Nephritis, check out our dedicated resource page. You may learn more about how kidney disease involvement may affect someone with lupus.

For recipes, you can check out Melanie Betz’s website and American Kidney Fund’s Kidney Kitchen.

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Esta discusión se lleva a cabo en español. En este episodio de la Serie de Expertos la Gerente de Educación para la Salud y Alcance Hispano, Leticia Ocaña, habla con la Dra. Cristina Drenkard, Profesora Asociada de Medicina de la Universidad Emory en Atlanta, Georgia, sobre los mitos y realidades comunes del lupus que rodean al lupus. 

Si necesita más información y apoyo, consulte nuestro paquete informativo sobre el lupus aquí.

Información adicional está disponible en español. Visite: lupus.org/es/resources

This discussion is conducted in Spanish. In this episode of The Expert Series, Health Education Manager for Hispanic Outreach Leticia Ocaña speaks with Dr. Cristina Drenkard, Associated Professor of Medicine at the Emory University in Atlanta, Georgia about the common lupus myths and realities surrounding lupus. 

If you need more information and support, please take a look at our lupus information packet here.

More resources are available in Spanish, visit: Lupus.org/es/resources

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In this episode of The Expert Series, Dr. Diane Kamen, Associate Professor of Medicine at the Medical University of South Carolina, Division of Rheumatology, will be sharing updates regarding research for treatments in lupus. She highlights the history of autoimmunity research, stem cell research and newly approved treatments for lupus.

For more research news updates, visit: Lupus.org/News

If you are interested in participating in research, visit: Lupus.org/RAY

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The Lupus Foundation of America Health Education Specialists have had increased calls and emails from people with lupus, with questions about safely returning to work. We know that this year, is a very unique one for getting back to work with the COVID-19 pandemic. But we also know that working with lupus is a very important topics for most people with lupus and one we want to make sure we cover.

Please find the links to important resources discussed in this episode:

Lupus and the workplace FAQs | Lupus Foundation of America

What you need to know about workplace accommodations | Lupus Foundation of America

Call 211 for Essential Community Services | United Way 211

COVID-19 Vaccines for Children and Teens | CDC

JAN - Job Accommodation Network (askjan.org)

ADA.gov homepage

Coronavirus Disease (COVID-19) | Occupational Safety and Health Administration (osha.gov)

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It’s Men’s Health Month and we want to discuss how lupus affects men.

In this episode of The Expert Series, Men’s Health and Special Considerations with Lupus, we answer some important questions about men’s health with Dr. Niewold, Director of the Colton Center for Autoimmunity and Judith and Stewart Colton Professor of Medicine and Pathology at New York University Grossman School of Medicine.

For more information about lupus and men, click here.

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Drs. Ashira Blazer and Denise Kimbrough discuss the recent removal of the African American/Black race coefficient from the Kidney Donor Profile Index (KDPI) by the Organ Procurement and Transplantation Network (OPTN). Learn about the implications for lupus patients with kidney disease and the potential impacts on health equity.

Episode Takeaways:

• Lupus-related kidney disease (lupus nephritis) disproportionately affects African American/Black, Hispanic, Indigenous, South Asian and Latino/a populations, who face longer transplant wait times due to systemic inequities and social determinants of health.
• Biases in medical algorithms, such as race-based estimated glomerular filtration rate (eGFR) calculations, can harm patient outcomes.
• Recent removal of race from eGFR calculations could potentially improve access to transplants for communities where previous opportunities for transplantation were significantly lower.
• Enhancing education and awareness related to kidney health is essential for addressing these health disparities and improving outcomes.

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published.

Related Resources:

• New Policy Will Remove Race, Improve Equity in Transplantation (National Kidney Foundation)
• Kidney transplant for lupus: Your essential questions answered (LFA)
• Lupus Nephritis Information Center (LFA)
• Lupus and the Kidneys (LFA)
• What is lupus nephritis? (LFA)

Getting an early and accurate lupus diagnosis is critical to preventing long-term consequences of the disease.

In this episode of The Expert Series, Could It Be Lupus? we answer some important questions about labs and diagnostic assessments for lupus diagnosis with Dr. Adegbenga Bankole from Carillion Clinic in Roanoke, Virginia.

For more information about diagnosing lupus click here.

This episode is sponsored by Exagen. The need for improved lab tests prompted the Lupus Foundation of America to support early research on the development of Cell-Bound Complement Activation Products also known as CB-CAPs. CB-CAPs are now the cornerstone of Exagen’s AVISE CTD test for diagnosis and AVISE SLE Monitor used to uncover disease activity in people who have lupus. More about AVISE can be found at www.avisetest.com.

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In this episode of The Expert Series, we discuss Managing Your Journey with Lupus Nephritis with Wendy Rodgers. Wendy is the Senior Manager for Community Outreach and Engagement for the Lupus Foundation of America and lupus warrior. With a background in science and education, and has lived with lupus for 21 years (and counting), she provides helpful insights into managing your lupus nephritis and how to find resources along the way.

For more information about lupus nephritis click here.

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In this episode of The Expert Series, we discuss Top Questions about Skin and Hair with Fotios Kompouras, MD. Dr. Kompouras is an Assistant Professor of Medicine and Director of the Yale Lupus Program in Connecticut. He attended St. George's University School of Medicine and worked closely with Lupus Foundation of America’s Acting Medical Director, Dr. Susan Manzi, investing novel therapeutics for lupus at the University of Pittsburgh and Allegheny Clinic before moving to Yale. He has assisted in important clinical research over the course of his career that has contributed to the treatments for lupus and has developed a cohort of lupus patients for novel lupus research. He also has developed the Rheumatology/Dermatology clinic with Sarika Rama Chandra at Yale.

For more information about lupus symptoms involving skin and hair click here.

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In this episode of The Expert Series, we discuss Lupus & Physical Activity with Hazel L. Breland PhD, FAOTA, OTR/L. Dr. Breland is an Associate Professor of Occupational Therapy at the Medical University of South Carolina, doctoral capstone coordinator, and past president of the Association of Rheumatology Professionals, the interprofessional division of the American College of Rheumatology. Her academic areas of focus include diversity, equity, and inclusion; interprofessional education, community engagement, occupational therapy clinical education; and, patient-centered interventions for chronic conditions

For more information about low impact exercises and activities for people with lupus, click here.

2020 was an unprecedented year. The lupus community is strong and we helped each other through this year by sharing our wisdom and compassion. In this episode, we asked both experts in the field as well as people with lupus for advice as we approach 2021.

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En este episodio de The Expert Series o la Serie de Expertos, Leticia Ocaña, MPH, CHES, Educadora de la salud de La Fundación de Lupus de América comparte más información sobre cómo nuestras educadoras de la salud pueden ayudarle a entender y manejar el lupus y los recursos que puede utilizar, incluyendo: Take Charge, LupusConnect™, y Lupus Foundation of America Caregiver Toolkit. 

In this episode of The Expert Series, we discuss The Importance of Support with Lupus Foundation of America staff: Wendy, our Community Outreach and Engagement Manager, and Lauren, our Health Education Nurse Manager. Wendy and Lauren share more information about types of support, support groups, and helpful resources for those looking to build their support system.

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In this episode of The Expert Series, we discuss Kidney Health and Lupus with Dr. Brad Rovin, Nephrologist at Ohio State University Wexner Medical Center. Dr. Rovin explains what to expect from a lupus diagnosis, lifestyle considerations for healthy living, and what exciting new treatments are on the horizon for people with lupus nephritis.

This episode is sponsored by Aurinia Pharmaceuticals. Aurinia Pharmaceuticals is committed to supporting the needs of the lupus nephritis community. That’s why they created the ALL IN program, a source of information, resources, and support for those affected by lupus nephritis, an inflammation of the kidneys caused by lupus. For more information visit www.allinforln.com. 

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 In this episode of The Expert Series, Reproductive Health and Lupus, Dr. Jane Salmon shares information about reproductive health, antiphospholipid syndrome (APS), challenges with pregnancy with lupus and tips on how to prepare for a having safe pregnancy.

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In this episode of The Expert Series, Telehealth and Lupus, Dr. Donald Thomas shares information about telehealth and tips on how to prepare for a virtual visit with your doctor.

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About the Presenter

Dr. Donald Thomas teaches at the Walter Reed National Military Medical Center as an Associate Professor of Clinical Medicine of the Uniformed Services University of the Health Sciences, a practicing rheumatologist in Greenbelt, Maryland and author of the” Lupus Encyclopedia: A Comprehensive Guide for Patients and Families.”

March is Kidney Month! Join us for a conversation with Dr. Brad Rovin, an expert in autoimmune kidney disease, where we talk about lupus nephritis and kidney health for people with lupus.

Depression and anxiety has increased among Americans as the coronavirus pandemic continues to evolve.

In this episode of The Expert Series, Mental Health and Wellness During a Time of Uncertainty, Dr. Neda Gould shares information about stress and anxiety, coping strategies and will lead a brief guided meditation practice.

In this episode of The Expert Series, Kathryn Wierenga, one of the 2019 recipients of the Lupus Foundation of America’s Gina M. Finzi Memorial Student Summer Fellowship Award, shares more information about the Importance of Fatty Acids and People with Lupus.

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About the Presenter

Kathryn Wierenga graduated with a bachelor’s in science from Michigan State University and is currently a doctorate student in their Department of Biochemistry and Molecular Biology with a dual major in Environmental and Integrative Toxicological Sciences. She is currently studying how Omega-3 fatty acids suppress lupus flaring.

In this episode of The Expert Series, Lauren Metelski, RN, Health Education Nurse Manager for the Lupus Foundation of America shares more information about how our health educators can help you navigate your lupus journey and resources that you can use to better manage the disease, including:

- Take Charge E-mail Series: a weekly education email series for people with lupus, including those recently diagnosed. Each week for 12 weeks, you'll get an email from our Health Educators with tips and resources that can empower you to take charge of your health.

- LupusConnect™: an online lupus community where individuals with lupus and their loved ones can engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of lupus.

- Lupus Foundation of America Caregiver Toolkit: a downloadable toolkit designed to provide you with guidance, support, and advice, whether you have been a caregiver for just a few days, or for several years.

The Expert Series by the Lupus Foundation of America is an educational podcast series featuring empowering conversations with leading lupus experts with a focus on helping you live well with lupus.

Each month, lupus experts will offer invaluable insight on a variety of important topics, providing you with the knowledge you need to better manage the disease.

New segments of The Expert Series are available on the third Thursday of every month. Subscribe on Lupus.org/TheExpertSeries to receive an email when new episodes are released.

In this episode, we talk with Dr. Sasha Bernatsky, about lupus and cancer, if there’s a link between lupus and cancer, and a new abstract about cancer incidence and risk factors in a large SLE cohort. 

Dr. Bernatsky is a rheumatologist, a James McGill professor and a senior scientist in the Centre for Health Outcomes Research and Division of Clinical Epidemiology at the Research Institute of the McGill University Health Centre. Her expertise lies in using ‘big data’ from health services, linked to additional clinical sources of information.

• Read more about lupus facts and statistics

• Learn how doctors diagnose lupus

• FAQs about participating in clinical trials

• Help expand lupus research through RAY (Research Accelerated by You)

• Read the mentioned abstract: Updated analyses  of cancer incidence and risk factors in a large international SLE cohort

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In this episode of the Expert Series, we speak with Dr. Christie Bartels about stress and stress management for people with lupus. Dr. Bartels covers how to manage stress, resources to manage stress and the difference between stress symptoms and lupus symptoms. 

Dr. Bartels is Division Chief of Rheumatology at the University of Wisconsin School of Medicine and Public Health and Chair of the American College of Rheumatology (ACR) RISE Registry Health IT Committee. As a rheumatologist health services and implementation researcher, Bartels’ work aims to improve cardiovascular health and reduce disparities among patients with lupus and rheumatic diseases. 

For more resources on stress and stress management:

• Managing stress when you have lupus

• Managing mental health with lupus

• Find Support Near You

Other resources mentioned in the episode

• SELF

• Insight Timer

• Arthritis Foundation’s Walk with Ease program

In this episode of The Expert Series, Dr. Tamar Rubinstein, a pediatric rheumatologist at the Children’s Hospital at Montefiore in New York, talks with us about how lupus affects teenagers, how they can cope with lupus, and how to communicate with health care providers as teens get older. 

Her research focuses on improving mental health and disease outcomes in youth with lupus and has been funded by the Lupus Foundation of America, the Rheumatology Research Foundation, the Childhood Arthritis and Rheumatology Research Alliance (CARRA)/ Arthritis Foundation, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the NIH.

Resources:

• Find out more about lupus and teens
• School survival guide for teens with lupus
• Helping teens learn to cope with lupus
• SELF app, for people 18+ in the U.S.

Mentioned resources:

• Take a pain check, a chronic disease podcast meant to support youth with rheumatic diseases

In this episode of The Expert Series, Dr. Anca Askanase, professor of medicine, the founder and director of Lupus Center and director of Rheumatology Clinical Trials at the Division of Rheumatology of the Columbia University Irving Medical Center in New York City, will be sharing about her role in the successful treatment of a catatonic woman who awakened after 20 years.

Read the article on April’s case and others on the Washington Post,

How autoimmune disease can attack the brain, cause psychiatric symptoms

Lupus resources:

• Coping with the cognitive symptoms of lupus
• What is inflammation?
• How lupus affects the body

In this month’s episode, we learn more about visible symptoms of lupus with Dr. May Choi. Dr. Choi will discuss the difference between visible and invisible symptoms, treatment options, and ways to cope with visible manifestations of lupus.

Dr. Choi is a rheumatologist, clinician scientist, and Assistant Professor at the Cumming School of Medicine, University of Calgary.

Resources

• Check out our previous episode about invisible symptoms with Dr. Cynthia Aranow
• Use this sheet to keep track of your lupus symptoms
• Learn how lupus affects the body

En este episodio de La Serie de Expertos, el pódcast de la Fundación de Lupus de América, la Dra. Olga Kromo analiza las complejidades del lupus y su impacto en el manejo del dolor. Aborda los distintos tipos de dolor, las opciones de tratamiento y la carga emocional que conlleva el dolor crónico. Destaca la importancia de comprender el origen del dolor, mantener una comunicación clara con los profesionales de la salud y contar con una atención integral. Asimismo, resalta la relación entre el dolor y la fatiga, el papel de la alimentación y las investigaciones futuras que ofrecen tratamientos prometedores.

This episode is also available in English. Listen here: https://open.spotify.com/episode/0bJcmfMlrSJno9EtoYbBYW

Regístrese para recibir correos electrónicos de la Fundación de Lupus de América (LFA) cuando se publiquen nuevos episodios: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html (en inglés)

Conclusiones:

• El lupus es una enfermedad compleja que causa inflamación y diferentes tipos de dolor.
• El dolor crónico y la fatiga pueden afectar de manera significativa la vida diaria, el bienestar emocional y la salud mental.
• El manejo del dolor a menudo requiere medicamentos, cambios en el estilo de vida y técnicas de reducción del estrés.
• La alimentación desempeña un papel importante en el manejo de los síntomas del lupus.
• La comunicación clara con los profesionales de la salud y el seguimiento de los síntomas son fundamentales para una atención eficaz.
• Las redes de apoyo, la educación y la investigación en curso ofrecen esperanza de tratamientos mejorados y futuros avances.

In this episode of the Lupus Foundation of America's The Expert Series podcast, Dr. Olga Kromo discusses the complexities of lupus and its impact on pain management. She covers types of pain, treatment options, and the emotional toll of chronic pain. She emphasizes understanding the source of pain, clear communication with providers, and comprehensive care. She also highlights the link between pain and fatigue, the role of diet, and future research with promising treatments.

Este episodio también está disponible en español. Escúchelo aquí: https://open.spotify.com/episode/3cC5lbZcrrMkTVV31xkejC

Sign up to receive emails from the Lupus Foundation of America (LFA) when new episodes are published: https://support.lupus.org/site/SPageNavigator/email_subscribe_expert_series.html

Episode Takeaways:

• Lupus is a complex disease that causes inflammation and different types of pain.
• Chronic pain and fatigue can greatly affect daily life, emotional well-being, and mental health.
• Pain management often requires medications, lifestyle changes, and stress reduction techniques.
• Diet plays an important role in managing lupus symptoms.
• Clear communication with healthcare providers and tracking symptoms are key to effective care.
• Support networks, education, and ongoing research offer hope for improved treatments and future breakthroughs.