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A Patient’s Journey with Amyloidosis


On November 8, 2022, IMIG students had the opportunity to hear from one of the patient speakers from the Amyloidosis Speakers Bureau who shared their personal journey with amyloidosis — from symptoms, through diagnosis, treatment, and life today battling a rare and incurable disease.


Amyloidosis is the buildup of a protein called amyloid in the body’s tissues or organs. Amyloid isn’t normally found in the body, but it can be formed from several different types of protein. Amyloid proteins may affect only a single organ or, often, are spread throughout the body. They can affect different organs in different people, and there are different types of amyloid proteins, making this complex disease often elusive to diagnose. Depending on the type of amyloidosis (AL, ATTR wild-type, hATTR, etc.), amyloid can deposit in the heart, kidneys, nervous system, spleen, digestive tract, or other organs and soft tissues. Severe amyloidosis can result in life-threatening damage to these organs or even failure.
Amyloidosis is not well known; however, there is a belief within the medical community that this disease is not as rare as once thought. Instead, it is underdiagnosed or diagnosed when it is too late to make a difference. The complexity of this disease makes diagnosis one of the biggest challenges affecting patient lives. It is not uncommon to hear from patients that it took multiple years and multiple doctors to ultimately arrive at a correct diagnosis, all the while the disease continued to progress. 


The Amyloidosis Speakers Bureau (ASB) is an initiative focused on educating the next generation of doctors during medical school about this disease through presentations from amyloidosis patients and materials by expert medical advisors. They believe this will translate to a heightened awareness of the disease, arriving at an earlier diagnosis and start of treatment, and in the end, improve patient survivorship. More information about the ASB can be found at www.mm713.org/speakers-bureau/