All Things Amyloid

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Not everyone is wired to be outgoing and assertive. For them, finding their voice to advocate for themself may well be easy. But for others, finding their voice and confidence to communicate with their healthcare team may be extremely challenging. In this episode I’ll speak with Liz who will share her journey to find her voice, and how that has transformed her relationship with her medical team. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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In this episode, our guest, Jenelle Murphy, is here to talk about her experience advocating for her father, Albert Sanders, who unfortunately had a long journey with ATTR wild-type amyloidosis. Throughout his life he had more than 20 major surgeries, some of them caused by amyloidosis, but it wasn’t until he was 65 that he was appropriately diagnosed. Leading up to his diagnosis he started having cardiac symptoms and Jenelle had to advocate for him throughout his journey to make sure he received the best, safest care. This personal story really shows how powerful and important advocating for yourself, your loved ones, or a friend really is. 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. Giada Bianchi, hematologist at the Amyloidosis Program at Brigham & Women’s Hospital and Dana-Farber Cancer Institute. Adapted from her video, hear about the relationship between AL amyloidosis and multiple myeloma. While both AL amyloidosis and multiple myeloma are plasma cell disorders and share similar patient care treatments, they diverge in pathogenic mechanisms. It’s important to note that approximately 10-15% of multiple myeloma patients will experience overlapping AL Amyloidosis, elevating the importance of understanding the similarities and differences in diagnostic criteria and patient care. In this presentation, Dr. Bianchi outlines the distinguishing diagnostic criteria between the two, why only one is considered cancer. 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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When you have an incurable disease that has treatments available, like amyloidosis, unfortunately it does not necessarily mean there is a cure. Treatments can be effective in getting the disease under control and reducing side effects, but patients are continually monitored to ensure the disease doesn’t relapse. And if at some point the disease reactivates, emotions can come alive. In today’s episode we’ll be talking about relapsing and what patients may go through when that happens. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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Isabelle was diagnosed some 29 years ago. Struggling with symptoms, no treatments available other than being one of the earliest to have a stem cell transplant, and a new husband … she had so much going on. But her disease burden improved, and although she’ll forever be a patient, she became an advocate. Listen as we chat about life yesterday, today, and tomorrow. No doubt you’ll be inspired! To learn more about the Amyloidosis Research Consortium, visit arci.org.  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 renowned researcher Dr. Jeff Kelly from Scripps Research, pioneer in the field of amyloidosis. Current medical education on amyloid diseases is 25 years old and materially outdated, punctuated by rapid advancement in the last decade. Adapted from his video “The Systemic Amyloidoses vs Parkinson’s vs. Alzheimer’s” hear from Dr. Kelly, developer of ATTR amyloidosis drug Tafamidis, about the current biology and how amyloid diseases such as the Systemic Amyloidoses (ATTR and AL), Parkinson’s and Alzheimer's are today believed to be more similar than different. 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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What if you’re a caregiver for one of your parents as they live with the symptoms of a devastating disease - hereditary amyloidosis? You have to watch them deteriorate, see their life become more difficult, and you knew that at the time there were no treatments available. You dig in to do your research and discover that amyloidosis goes back at least 5 generations in your family. In addition, research reveals future generations, including yourself and your children, have a 50/50 chance of testing positive. The good news is there are now treatments available to slow the progression of the disease.  For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).

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The doctor-patient relationship is so important to a patient’s journey, especially when dealing with a complex disease like amyloidosis. Listen to Mackenzie where she talks with Erin Poyant, founder of #hattrnextgen and Senior Manager of Education and Awareness for the Amyloidosis Research Consortium about how this relationship can be strengthened within the Black community. In this episode Erin emphasizes the importance of addressing and mitigating biases in the doctor-patient relationship to encourage positive communication and trust within the Black community. 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. Mazen Hanna, cardiologist at the Cleveland Clinic and co-director of the Amyloid Program. Adapted from his video “Cardiac Amyloidosis - AL and ATTR: Two Different Conditions” he explains how cardiac amyloidosis can originate from two very different types of amyloidosis: AL (light chain) or ATTR (transthyretin). Dr. Hanna illustrates how clinicians can identify cardiac amyloidosis and look to different diagnostic work-ups to understand whether the issues are due to AL or ATTR amyloidosis. These two conditions are treated differently and have different prognoses, emphasizing the importance of identifying the type of amyloidosis involved. 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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For AL amyloidosis patients, the kidney is one of the most commonly impacted organs. Rigid amyloid fibrils can infiltrate the organ and impair function. And when diagnosed late, the kidney can be in late stage kidney failure. At that point there are two options for patients - dialysis or kidney transplant. In today’s episode we’ll be talking with Mark McIntosh about his kidney transplant journey and how he has become a kidney donation advocate through Drive for Five (www.dffnetwork.org).  For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).