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
When to Consider Discontinuing Maintenance Therapy?
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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 post-diagnosis, go off treatment if they have achieved complete or very good response, relapse, and then need to go back on treatment. This cycle may span multiple years, and may repeat. It varies widely from patient to patient. Particularly challenging may be when patients have been on treatment and, for whatever reason, feel it may be time to consider discontinuing their treatment. This was the case for today’s guest, Darlene. For an overview of amyloidosis, please see episode 2 (for clinicians) or episode 3 (for patients).
