The story of Dylan
My mom, aunt and grandmother all died of Hereditary Amyloidosis. I was about 10-years old when I was first exposed to the devastating effects of the disease and it lived with my family and I until I was 17. Time passed after my mom died and at the age of 26, I started to experience some numbing sensations in my arm and hands. I am an artist and I play guitar, so ordinarily I’d suspect these to be the cause. However, I knew that one of the symptoms of Amyloidosis was carpal tunnel syndrome and that my mom also had issues with her hands before she got sick.
In 2006, I went in for my genetic testing and six weeks later, I received the call from Dr. Skinner, the Director of the Boston Amyloid Treatment & Research Program at the time, who confirmed my suspicions that I carried the TTR gene. A year later, I went in for my fat pad biopsy and was officially diagnosed with Hereditary Amyloidosis after protein deposits were discovered in my tissue.
With the symptoms I am experiencing in my everyday life and the results coming in from Boston Medical, I cannot help but be afraid.
My sister recently went in for testing as she also has the genetic mutation and is beginning to show signs of disease progression. If that wasn’t scary enough, there is a 50/50 chance that her 2-year-old daughter will also inherit the disease. With new research and drugs developing all the time, I am hopeful that there will someday be a cure. Although a cure may not benefit me, it could help save my sister, niece and others around the world.
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