All Things Amyloid
by Mackenzie's Mission
Latest episode
Becoming Brave Together: The Universal Gift of Caregiving
Becoming Brave Together: The Universal Gift of Caregiving
About this podcast
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
The newest 20 of 55 episodes
- Becoming Brave Together: The Universal Gift of Caregiving · 24 min · Episode 55Send us Fan Mail Caregiving seems to be a universal role that many of us play at some time in our lives, whether we are ready for it or not. It may be for a child, parent…
- Have Medicare & Amyloidosis? How to Make the Most of Your Coverage · 33 min · Episode 54Send us Fan Mail It’s that time of year for Medicare Open Enrollment - a season that impacts so many of our amyloidosis patients. I’ll be speaking with Ann Kayrish, an expert in…
- Amyloidosis and the Gut · 26 min · Episode 53Send us Fan Mail Amyloidosis patients often experience GI issues, both before and after diagnosis. The commonness of these symptoms can increase the difficulty of diagnosing…
- Battling the Invisible - Supporting My Emotional Self While Navigating AL Amyloidosis · 15 min · Episode 52Send us Fan Mail 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…
- Being Proactive in One's Selfcare · 24 min · Episode 51Send us Fan Mail 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…
- Uncovering My Family Roots · 25 min · Episode 50Send us Fan Mail 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…
- AL Amyloidosis: The Past, Present, and Future · 15 min · Episode 49Send us Fan Mail 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…
- Genetic Counseling 101 · 19 min · Episode 48Send us Fan Mail 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…
- What ‘clues’ can PM&R providers watch for to suspect Amyloidosis? · 14 min · Episode 47Send us Fan Mail Amyloidosis is a great masquerader, presenting with a wide array of seemingly unconnected symptoms. This reality is likely one of the biggest reasons for…
- I Just Had CAR-T – What Was It Like? · 17 min · Episode 46Send 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…
- Why Is Amyloidosis So Often Misdiagnosed? · 20 min · Episode 45Send 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…
- When to Consider Discontinuing Maintenance Therapy? · 18 min · Episode 44Send 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…
- Physical Therapists - Be On The Lookout! · 31 min · Episode 43Send 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…
- Amyloidosis For Patients with Dr. Kevin Alexander · 32 min · Episode 42Send 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…
- Why is Amyloidosis Bad for Your Kidneys? · 20 min · Episode 41Send 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…
- An AL Patient Going Through Peritoneal Dialysis · 37 min · Episode 40Send 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…
- Keys to Making a Strong Patient-Provider Relationship · 29 min · Episode 39Send 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…
- Amyloidosis Destroyed My Heart; Organ Transplantation Gave Me Life · 12 min · Episode 38Send 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…
- If I Could Redo My Diagnostic Journey What Would I Do Differently? · 16 min · Episode 37Send 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…
- The Hidden Thread: Rethinking Amyloid Diseases as One System · 17 min · Episode 36Send 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…
