All Things Amyloid

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In today’s episode we’ll be talking about that invisible fight that every patient with a challenging disease goes through … the battle of emotional health. What amplifies this fight is that it is unseen, making it so much more difficult to navigate. Only you can feel these emotions, but you are not alone. With me today is Liz, a fellow AL amyloidosis patient. She will share her emotional health journey, how she has been able to find a good place, and share ideas that might help others. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Has taking care of yourself taken a back seat to your amyloidosis? It could happen easily, even without intention. And whether intended or accidental, how do you get back on track? Our guest today – Dr. David Lavine -- is going to talk to us about that. He’s a retired physician and amyloidosis patient who is committed to helping our community improve our wellness. NOTE: this is not medical advice and should be discussed with your physician. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Hereditary amyloidosis not only affects the patient. It’s about their family, both immediate and extended, as well as past and future. We are learning about amyloidosis at an exponential pace, allowing families to understand their roots like never before. Today we’ll talk with Sean about how his trip to Ireland to support the local amyloidosis community allowed him to further uncover his own family history. 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 treated to a 40-year perspective of this disease. Adapted from his video “AL Amyloidosis: The Past, Present, and Future” Dr. Morie Gertz, professor of medicine at the Mayo Clinic in Rochester and world-renowned expert in amyloidosis, shares his views on the past, present, and future treatments of AL (light chain) amyloidosis. Over his four decades of experience with this disease, he has diagnosed and treated thousands of patients, advanced research, and managed countless clinical trials. This makes him the perfect professor to orate on the dramatic evolution of treating this historically devastating disease to the optimism of today, and the breakthrough world of tomorrow. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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In today’s episode we’ll be talking about genetic counseling basics. And while many aren’t familiar with genetic testing, this topic is important for patients who have one of the more than 130 types of genetic variants of hereditary amyloidosis. Our guest is Tiahna Moorthy, a certified genetic counselor, who will discuss what patients need to know. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Amyloidosis is a great masquerader, presenting with a wide array of seemingly unconnected symptoms. This reality is likely one of the biggest reasons for Amyloidosis being mis- and under-diagnosed.  Patients often go years, seeing specialist after specialist, searching for answers. Thankfully our knowledge of this disease has rapidly advanced over the last decade, and there are now multiple FDA-approved treatments. We just need to get patients diagnosed, and the sooner the better. So the push is on to educate the medical community, from current providers to future providers, and across many different specialties including PM&R. PM&R stands for Physical Medicine and Rehabilitation – a medical specialty focused on the diagnosis, treatment, and management of patients with physical impairments or disabilities. In this episode I’ll talk with one of our ASB patient educators – Dr. Steven Gross – who is a retired PM&R specialist and ATTRwt-CM patient. He’ll talk about why he joined the ASB and what ‘clues’ PM&R providers can watch for to suspect Amyloidosis. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Thankfully for patients, treatments for amyloidosis continue to advance. One of the newest is CAR-T cell therapy for AL Light Chain amyloidosis. According to the Cleveland Clinic, this therapy targets the B-cell maturation antigen (BCMA) on the surface of the plasma cells that cause the disease. Early results are highly promising and may provide quick reduction in light chains. In this episode Mackenzie chats with Rhonda about her experience preparing for, and going through, CAR-T cell therapy. If you want to hear from a patient about a new and exciting treatment – have a listen. 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. Angela Dispenzieri, hematologist from the Mayo Clinic. Adapted from her video “Why is amyloidosis so often misdiagnosed?”, Dr. Dispenzieri discusses the top three reasons why amyloidosis is often misdiagnosed. Two of the reasons - the complexity of the disease and commonality of symptoms - she examines in depth. Importantly, she offers guidance on appropriate diagnostic pathways for clinicians. Her 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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Having AL amyloidosis, a disease that at present is incurable, can be an emotional rollercoaster. Over the course of one’s journey, patients may go on treatment post-diagnosis, go off treatment if they have achieved complete or very good response, relapse, and then need to go back on treatment. This cycle may span multiple years, and may repeat. It varies widely from patient to patient. Particularly challenging may be when patients have been on treatment and, for whatever reason, feel it may be time to consider discontinuing their treatment. This was the case for today’s guest, Darlene.   For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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It’s key for front-line healthcare providers to know about amyloidosis and the most common symptoms. They can play a valuable role in early suspicion, leading to early diagnosis, and life-changing benefits for patients. Today our guest is Dr. Jenelle Murphy, who has a Doctorate Degree in Physical Therapy, who is here to talk about how physical therapists can help identify signs and symptoms of amyloidosis. Early diagnosis in this rare disease is very important, especially since there are FDA-approved treatments that can help prevent amyloid build up throughout the body. If physical therapists are more aware of these signs and symptoms, they can refer the patient out to the appropriate physician to get a full workup and possibly save a life! For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).