All Things Amyloid

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Lack of awareness, a gap in medical education, is among the most critical and urgent challenges facing the amyloidosis community today. Raising awareness to accelerate diagnosis, coupled with available FDA-approved treatments, leads to a significant improvement in patient lives. In this episode you’ll hear from medical educators, amyloidosis experts, and patients about how the Amyloidosis Speakers Bureau (ASB) brings the patient voice to medical education and complements traditional didactic and clinical studies. Together, this narrows the education gap and results in a more robust and durable education of medical trainees, thereby accelerating diagnosis and improving patient lives. The video of this presentation 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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Life is filled with uncertainty and can change in an instant, resulting in life-changing implications. In today’s episode we’ll be talking with hereditary amyloidosis patient Sean about his diagnosis and how it impacted just about all facets of his life. We’ll talk about changes he chose to make, and how they have defined a “New Normal” life for him. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Listen to Mackenzie in this episode of a nine part series where she talks with Erin Poyant, founder of #hattrnextgen and Senior Manager of Education and Awareness for the Amyloidosis Research Consortium, about the tumultuous road that led to the discovery of a rare and mysterious unknown genetic mutation in her family. Doctors were puzzled over an array of symptoms and a genetic test revealed the truth. Learn how Erin navigates grief and uncertainty, but rallies with a mission to increase knowledge, encourage earlier genetic testing, diagnosis, and treatment with the hope of a brighter future for those who carry the mutation or have been diagnosed with active hereditary amyloidosis, V122i mutation.  “Your father may have given you a disease, but he also gave you a roadmap.” Dr. John Berk, Amyloidosis Center at Boston Medical Center. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Nurses. Not enough can be said about their role in our care team and what they bring to the table. They truly are vital members of our care team. In today’s episode we’ll be talking with Jill Fleck, an amyloid clinic RN care coordinator at Mayo Clinic in Arizona. In our discussion, we’ll chat about nurses and why it’s important for patients to get to know them. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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While living with a chronic illness, especially a difficult one like amyloidosis, patients may experience periods of emotional darkness, where the proverbial glass is half empty. Powerful feelings, such as despair and depression, can overtake any positives of the situation. For many patients, moving from darkness into the light can offer hope, joy, and happiness from life in a new way. In today’s episode, Mackenzie and Gesna will discuss their own journeys through darkness and into light, and the power of shining that light in their own individual way. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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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.