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!
All Things Amyloid
A Diagnostic journey - Uncovering A Family’s Disease
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 navigates grief and uncertainty, but rallies with a mission to increase knowledge, encourage earlier genetic testing, diagnosis, and treatment with the hope of a brighter future for those who carry the mutation or have been diagnosed with active hereditary amyloidosis, V122i mutation. “Your father may have given you a disease, but he also gave you a roadmap.” Dr. John Berk, Amyloidosis Center at Boston Medical Center. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).
