All Things Amyloid

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All of us have seen the amazing forward progress over the last 10 years in the battle against amyloidosis – so much has changed -- from knowledge about the disease, to diagnosis, treatment, and patient outlook. It truly is astounding! To help us understand where we are today, and looking ahead to tomorrow, we are delighted to chat with Dr. Kevin Alexander, cardiologist from Stanford University to hear his insights for these exciting times. 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 hear from Dr. Jeffrey Zonder from the Karmanos Cancer Institute. Adapted from his video “Why is amyloidosis bad for your kidneys?” He provides a brief summary of amyloidosis. He’ll go on to describe how AL and AA are the two most prevalent types to affect the kidneys, detail how amyloidosis affects the kidneys, how this damage is assessed, and strategies for reducing kidney damage. 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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Advanced kidney failure can be an unfortunate reality to patients with AL amyloidosis. Physicians often discuss two paths forward - a kidney transplant and dialysis, which is often thought of as a bridge while waiting for a transplant. There are two basic types - hemodialysis and peritoneal dialysis. In today’s episode we’ll be talking about peritoneal dialysis, or PD for short, with Linda. She has been battling AL amyloidosis for ten years and is now on dialysis while waiting for a kidney transplant. Listen to hear what life is like for patients like Linda. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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The relationship between a patient and their provider is so important. It serves as a foundation upon which trust is built, expertise is shared, and life-impacting decisions are made. But it’s not automatic that the relationship is good. In today’s episode we’ll explore keys to making a strong patient-provider relationship with two wonderful guests – patient Giselle and her provider Dr. Nitasha Sarswat, cardiologist at the University of Chicago.  For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Amyloidosis is a ruthless disease, attacking organs, leading them towards failure when left untreated. Fortunately there are treatments that can help slow disease progression, with more hope on the way in clinical trials. But what about the diseased organ, infiltrated with those rigid amyloid fibrils? Until there is a solution to address breaking down these fibrils, organ transplantation can be a leading choice for patients to consider. In this episode we’ll talk with Rayna, an AL survivor, who successfully underwent a heart transplant. But it wasn’t an easy path to get there. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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We all have “hindsight is 20/20” vision, and for us patients, the majority of us can look back at our own diagnostic journey and identify actions we perhaps should have done something differently. And while we can’t go back in time, nor can we ignore the significant advancements in amyloidosis regarding the knowledge, awareness, and treatments of amyloidosis, we can offer insights that might help others that are earlier in their diagnostic journey. In this episode I’ll chat with Jerry about his thoughts on what he’d do differently looking back today. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Amyloid diseases are often seen as separate conditions — from Alzheimer’s to certain heart or kidney disorders — but they all share a common culprit: amyloid proteins that misfold and accumulate in the body. In this episode, we’ll explore with Dr. Michael Dobbs from Florida Atlantic University why understanding the common thread across these diseases could change the way we raise awareness, approach research, and develop treatments. Listeners will gain a fresh perspective on a group of diseases that affect millions, often quietly, and why seeing the bigger picture matters. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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For over two decades, Muriel Finkel has been running the Amyloidosis Support Groups (ASG). She’s a pillar in the industry and everyone knows her name. Her rolodex of physicians is unparalleled, and they all love her. The ASG is an extremely valuable resource for patients and caregivers, providing far more than just knowledge. Learning about current and potential treatments, advancements in the disease, and connecting with other patients and caregivers are just a few of the benefits. Hear from Muriel directly, who will share what she thinks is the #1 benefit the ASG offers. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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When a crisis hits a family member, of course you’ll be there to support and help them however you can. Perhaps they have always been there for you, and now it’s their turn. It may come when you may least expect it, so you juggle your life to be there. In today’s episode we’ll talk with Trent about how a diagnosis of amyloidosis for his mom Brenda has impacted their family. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Our government drafts, debates, and approves laws that govern important areas of our amyloidosis community. These laws can impact things like funding for research, patient access to treatments, and cost relief for patients (e.g., co-pay relief). As we will hear in today’s discussion with Kathi Luis from the Amyloidosis Foundation, it is absolutely critical that the voice of our community is heard by our legislators so they are aware of our issues and can work to design and advance appropriate solutions. To our listeners, if this is something you would like to learn more about or get involved with, contact Kathi Luis at [email protected]. Please remember her words … you can make a difference! For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).