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
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 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 he started having cardiac symptoms and Jenelle had to advocate for him throughout his journey to make sure he received the best, safest care. This personal story really shows how powerful and important advocating for yourself, your loved ones, or a friend really is. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).
