All Things Amyloid

Send us Fan Mail 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...

Send us Fan Mail 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,...

Send us Fan Mail 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 pa...

Send us Fan Mail 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 an...

Send us Fan Mail 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 Stanfo...

Send us Fan Mail 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,...

Send us Fan Mail 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, w...

Send us Fan Mail 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 provid...

Send us Fan Mail 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 transpla...

Send us Fan Mail 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...

Send us Fan Mail 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...

Send us Fan Mail 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, advanc...

Send us Fan Mail 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...

Send us Fan Mail 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 co...

Send us Fan Mail 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 he...

Send us Fan Mail 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 h...

Send us Fan Mail 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 tre...

Send us Fan Mail 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...

Send us Fan Mail 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...

Send us Fan Mail 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. Ke...

Send us Fan Mail 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....

Send us Fan Mail 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 th...

Send us Fan Mail 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 illu...

Send us Fan Mail 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 tra...

Send us Fan Mail Almost every amyloidosis patient will agree that they’d never heard the word ‘Amyloidosis’ until they were first diagnosed. Lack of awareness, in combination with Dr. Google, can leave patients feeling lost, hopeless, and alone. In today’s episode we’ll be talking with Linda, an AL amyloidosis patient, about her journey to finding a patient community and the tremendous value this...