Explorez tous les épisodes du podcast All Things Amyloid

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Amyloidosis is a complex, challenging disease - it’s a journey like no other. And what’s clear is that we patients can’t travel this journey alone. Many of us need a support team at some point. But how do you know what you need, where you can turn for help, and who does what? In today’s episode we’ll be talking with Linda, an AL amyloidosis patient, about ideas for assembling a support team. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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In this episode of All Things Amyloid, we are reminded how early diagnosis of amyloidosis, and the earlier the better, improves patient survival and quality of life. Adapted from his video “Building an Index of Suspicion for Cardiac Amyloidosis” Dr. Justin Grodin, a cardiologist and co-director of the UT Southwestern Multidisciplinary Amyloidosis Program, discusses early symptoms, family history, and red flags to be aware of in order to build a clinical index of suspicion for cardiac amyloidosis. His video can be found in the Education Hub on Mackenzie’s Mission website. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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The disease journey for all patients is punctuated with important points along the way - such as diagnosis and treatment. Amyloidosis, being a complex and not-well known disease, makes the journey all the more turbulent. For example, tests may imply a false-positive, or ill-informed providers may not be fully versed on the disease, either of which could lead to a mis-diagnosis. Or deciding which treatment is the appropriate path for a patient is another inflection point. We know providers always seek to do the best for their patients; however, there may be times where having another provider provide their opinion may be appropriate. That’s the topic for this episode - seeking a second opinion. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Over and over I hear from patients that prior to diagnosis they knew something was wrong. No matter what the doctor said or what they saw in the test results, something was just not right. In today’s episode we’ll be talking about that feeling patients can have, their sense that something is wrong, and how that is an important motivator to keep searching for answers. I’m happy to have Dan, a fellow AL amyloidosis patient, with me to talk about patients’ “sixth sense.” For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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This episode of All Things Amyloid is an adaptation of Amyloidosis Support Groups’ patient education video narrated by Michael York. You’ll hear a brief yet comprehensive overview of amyloidosis designed specifically for patients. It discusses what amyloidosis is, the wide range of symptoms, and which organs are typically involved. It focuses on the most common types, AL (light chain) and TTR (transthyretin), and summarizes the kinds of treatments that are currently available. The video can be found on AmyloidAware.com.

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In this episode of All Things Amyloid, Dr. Sarah S. Lee, Assistant Professor, Division of Hematology, at the City of Hope, provides a brief yet comprehensive clinical overview of amyloidosis. Dr. Lee discusses what is amyloidosis, most common types, the wide range of symptom presentations, and which organs are typically involved. Focusing on AL (light chain) and TTR (transthyretin), she then goes through a diagnostic workup to arrive at a diagnosis, stressing the importance of typing once the presence of amyloid has been confirmed. In conclusion, Dr. Lee describes treatments available and how they impact patient quality of life and prognosis. The video of her PowerPoint presentation can be found on our YouTube channel HERE.

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In our inaugural episode, hear from Mackenzie on why she founded Mackenzie’s Mission, how her foundation works to make a difference in the amyloidosis community, and what you can expect from the All Things Amyloid podcast. We hope you’ll join us!