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
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 her approach to how she is preparing herself and future generations for hereditary amyloidosis. “It’s all in the green binder.” For an overview of amyloidosis, please see episode 2 (for clinicians) or epis...
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 Lucas Pereira, a certified genetic counselor at Boston Medical Center’s Amyloidosis Center, who will discuss everything patients need to know. For an overview of amyloidosis, pl...
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, until he retired in early 2024. Back in 2020 he was diagnosed with Wild-Type Transthyretin Amyloidosis with cardiomyopathy – or ATTRwt-CM. It’s an interesting situation to be ...
There are many views across our patient community on the topic of disease knowledge. Some folks may find it empowering to know as much as they can about amyloidosis. Others may be 180 degrees in the other direction – it’s just not something they want to focus on and prefer to leave it to the experts. And then there are folks in between. In today’s episode we’ll be talking with Darlene, an amyloidosis patient, about st...
The treatment for patients with ATTR Transthyretin Cardiac Amyloidosis has advanced significantly since 2018 when there were no FDA-approved therapies. In this episode of All Things Amyloid, we hear from Dr. Mat Maurer at Columbia University. Adapted from his video he shares how diagnostic imaging techniques have significantly improved, thereby reducing the need for an invasive heart biopsy. In addition, he shares fas...
In today’s episode we’ll be talking about turning defense into offense in the fight against amyloidosis. I’m happy to have with me today Mike Lane who is going to share his journey with amyloidosis and how he has turned the tables on the fight against this disease. Mike, thank you so much for coming on the episode today and I am so excited to hear about your new nonprofit Amyloidosis Army (amyloidosisarmy.org)! But, f...
Advanced kidney failure can be an unfortunate reality to patients with AL amyloidosis. When approaching this stage, physicians may discuss a kidney transplant. In today’s episode we’ll be talking with Linda about the many considerations of a kidney transplant. She has been battling AL amyloidosis and is now on peritoneal dialysis while waiting for a kidney donor. For an overview of amyloidosis, please see episode 2 (f...
Lack of awareness, a gap in medical education, is among the most critical and urgent challenges facing the amyloidosis community today. Raising awareness to accelerate diagnosis, coupled with available FDA-approved treatments, leads to a significant improvement in patient lives. In this episode you’ll hear from medical educators, amyloidosis experts, and patients about how the Amyloidosis Speakers Bureau (ASB) brings ...
Life is filled with uncertainty and can change in an instant, resulting in life-changing implications. In today’s episode we’ll be talking with hereditary amyloidosis patient Sean about his diagnosis and how it impacted just about all facets of his life. We’ll talk about changes he chose to make, and how they have defined a “New Normal” life for him. For an overview of amyloidosis, please see episode 2 (for clinicians...
Listen to Mackenzie in this episode of a nine part series where she talks with Erin Poyant, founder of #hattrnextgen and Senior Manager of Education and Awareness for the Amyloidosis Research Consortium, about the tumultuous road that led to the discovery of a rare and mysterious unknown genetic mutation in her family. Doctors were puzzled over an array of symptoms and a genetic test revealed the truth. Learn how Erin...
Nurses. Not enough can be said about their role in our care team and what they bring to the table. They truly are vital members of our care team. In today’s episode we’ll be talking with Jill Fleck, an amyloid clinic RN care coordinator at Mayo Clinic in Arizona. In our discussion, we’ll chat about nurses and why it’s important for patients to get to know them. For an overview of amyloidosis, please see episode 2 (for...
While living with a chronic illness, especially a difficult one like amyloidosis, patients may experience periods of emotional darkness, where the proverbial glass is half empty. Powerful feelings, such as despair and depression, can overtake any positives of the situation. For many patients, moving from darkness into the light can offer hope, joy, and happiness from life in a new way. In today’s episode, Mackenzie an...
Amyloidosis is a complex, challenging disease - it’s a journey like no other. And what’s clear is that we patients can’t travel this journey alone. Many of us need a support team at some point. But how do you know what you need, where you can turn for help, and who does what? In today’s episode we’ll be talking with Linda, an AL amyloidosis patient, about ideas for assembling a support team. For an overview of amyloid...
In this episode of All Things Amyloid, we are reminded how early diagnosis of amyloidosis, and the earlier the better, improves patient survival and quality of life. Adapted from his video “Building an Index of Suspicion for Cardiac Amyloidosis” Dr. Justin Grodin, a cardiologist and co-director of the UT Southwestern Multidisciplinary Amyloidosis Program, discusses early symptoms, family history, and red flags to be a...
The disease journey for all patients is punctuated with important points along the way - such as diagnosis and treatment. Amyloidosis, being a complex and not-well known disease, makes the journey all the more turbulent. For example, tests may imply a false-positive, or ill-informed providers may not be fully versed on the disease, either of which could lead to a mis-diagnosis. Or deciding which treatment is the appro...
Over and over I hear from patients that prior to diagnosis they knew something was wrong. No matter what the doctor said or what they saw in the test results, something was just not right. In today’s episode we’ll be talking about that feeling patients can have, their sense that something is wrong, and how that is an important motivator to keep searching for answers. I’m happy to have Dan, a fellow AL amyloidosis pati...
This episode of All Things Amyloid is an adaptation of Amyloidosis Support Groups’ patient education video narrated by Michael York. You’ll hear a brief yet comprehensive overview of amyloidosis designed specifically for patients. It discusses what amyloidosis is, the wide range of symptoms, and which organs are typically involved. It focuses on the most common types, AL (light chain) and TTR (transthyretin), and summ...
In this episode of All Things Amyloid, Dr. Sarah S. Lee, Assistant Professor, Division of Hematology, at the City of Hope, provides a brief yet comprehensive clinical overview of amyloidosis. Dr. Lee discusses what is amyloidosis, most common types, the wide range of symptom presentations, and which organs are typically involved. Focusing on AL (light chain) and TTR (transthyretin), she then goes through a diagnostic ...
In our inaugural episode, hear from Mackenzie on why she founded Mackenzie’s Mission, how her foundation works to make a difference in the amyloidosis community, and what you can expect from the All Things Amyloid podcast. We hope you’ll join us!
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