All Things Amyloid
Hi everyone! My name is Mackenzie and I was diagnosed with AL amyloidosis at age 23. We don’t know the cause of this disease, but we do know that it can lead to serious and potentially life-threatening issues. This disease has changed me and my life in so many ways, and as a result, I founded Mackenzie’s Mission to join the fight against this disease.
Part of our effort is to raise awareness which, we believe, will accelerate diagnosis, enable earlier treatment, and improve patient lives. We do this in several ways, including our “All Things Amyloid” podcast. In our episodes, we will speak with patients and caregivers about their journey on a wide array of topics. We will also hear from amyloidosis experts about the medical side of this disease.
There is more hope for patients than ever before, and raising awareness around the globe is critical to improving patient lives. If you want to learn more about the work we’re doing at Mackenzie’s Mission, please visit mm713.org. Thanks for listening!
Episodes
41 episodes
Why is Amyloidosis Bad for Your Kidneys?
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...
An AL Patient Going Through Peritoneal Dialysis
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 ar...
Keys to Making a Strong Patient-Provider Relationship
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 tod...
Amyloidosis Destroyed My Heart; Organ Transplantation Gave Me Life
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 ...
If I Could Redo My Diagnostic Journey What Would I Do Differently?
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 ...
The Hidden Thread: Rethinking Amyloid Diseases as One System
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 wi...
Empowering Patients via the Amyloidosis Support Groups
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 ...
How a Diagnosis of Amyloidosis Has Impacted Our Family
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 t...
Working with Capitol Hill for Change - You CAN Make a Difference!
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 reli...
Finding My Voice
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 challe...
The Power of Advocacy
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 s...
What is the Relationship Between AL Amyloidosis and Multiple Myeloma?
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...
Relapsing - What’s Next?
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 p...
Isabelle: The Patient and the Advocate
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, a...
The Systemic Amyloidoses vs Parkinson’s vs. Alzheimer’s
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, punctua...
When the Caregiver Becomes the Patient
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 w...
To HCPs: Strengthening the Doctor-Patient Relationship With the Black Patient Community
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 ...
Cardiac Amyloidosis - AL and ATTR: Two Different Conditions
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 h...
An AL Patient’s Journey Through Kidney Transplant and Organ Donation Advocacy
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 ther...
Finding My Community of Amyloidosis Patients
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 epis...
ATTR Amyloidosis Treatments: Stabilizers and Silencers
In this episode of All Things Amyloid, the focus is on the two primary treatments available for ATTR amyloidosis. Adapted from his video “ATTR Amyloidosis Treatments: Stabilizers and Silencers,” Dr. Brett Sperry, cardiologist and director of th...
Amyloidosis is No Longer a Death Sentence - There is HOPE
For decades, AL amyloidosis was a disease for which there were no FDA-approved therapies, treatments we did have were often borrowed from multiple myeloma, and resulted in poor outcomes for patients. It is one of the 7,000 diseases classifie...
Preparing Future Generations for an Inherited Disease ("green book")
Listen to Mackenzie in this episode where she talks with Erin Poyant, founder of #hattrnextgen and Senior Manager of Education and Awareness for the Amyloidosis Research Consortium. In this episode, Erin delves into he...
Amyloidosis Genetic Counseling - What You Need to Know
In today’s episode we’ll be talking about genetic counseling for those impacted by hereditary amyloidosis. This topic is important for patients who have one of the more than 130 types of genetic variants of hereditary amyloidosis. Our guest is ...
When the Doctor Becomes an Amyloidosis Patient
What if you are a doctor and diagnosed with amyloidosis, and now you’re a patient? In this episode we’ll be talking with Dr. Charles Schulman, a general cardiologist. He was on the staff at Beth Israel Deaconess Medical Center for over 53 years...