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
What ‘clues’ can PM&R providers watch for to suspect Amyloidosis?
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
Amyloidosis is a great masquerader, presenting with a wide array of seemingly unconnected symptoms. This reality is likely one of the biggest reasons for Amyloidosis being mis- and under-diagnosed. Patients often go years, seeing specialist after specialist, searching for answers. Thankfully our knowledge of this disease has rapidly advanced over the last decade, and there are now multiple FDA-approved treatments. We just need to get patients diagnosed, and the sooner the better. So the push is on to educate the medical community, from current providers to future providers, and across many different specialties including PM&R. PM&R stands for Physical Medicine and Rehabilitation – a medical specialty focused on the diagnosis, treatment, and management of patients with physical impairments or disabilities. In this episode I’ll talk with one of our ASB patient educators – Dr. Steven Gross – who is a retired PM&R specialist and ATTRwt-CM patient. He’ll talk about why he joined the ASB and what ‘clues’ PM&R providers can watch for to suspect Amyloidosis. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).
