Sean Riley resides in New Hampshire and is a retired nuclear reactor operations training instructor and professor of Nuclear Engineering Technology. He was diagnosed with the rare disease hereditary amyloidosis in March of 2019 and began treatment immediately. In his own words “Although this can be a devastating disease, I felt such a great sense of relief upon finally being diagnosed after a seven years journey of worsening symptoms and multiple failed attempts to arrive at a diagnosis. I feel so fortunate that there are now novel medical treatments available that can slow down or halt the disease progression. I consider my case to be a success story”. 

Now five years into treatment, Sean is pleased to report that progression of his disease appears to be halted. His disease symptoms include cardiomyopathy as well as peripheral and auto neuropathy. The neuropathy has resulted in muscle weakness and severe orthostatic hypotension, conditions which have rendered him disabled. His greatest physical challenge is walking, particularly with navigation of stairs, due to muscle atrophy and cardio related fatigue.

Sean volunteers as a speaker for the Amyloidosis Speakers Bureau, a non-profit organization, whose mission is to help educate the medical community such that future patients can be successfully diagnosed and treated at a much earlier stage of disease progression than he was. He is retired and enjoys spending his time with his amazing wife Robin, cooking, drawing, and tending to their Great Pyrenees dogs Cassie and Julia.