Patient Speaker/Educator
Amyloidosis Speakers Bureau
Merrimack, NH
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 started treatment with ONPATTRO shortly thereafter. The specifics of Sean’s case include cardiomyopathy as well as peripheral and auto neuropathy. These conditions have resulted in muscle weakness which has rendered him disabled, his greatest challenge being walking, particularly with navigation of stairs and inclines. Since the start of treatment Sean is pleased to report that progression of the disease appears to be halted. In his own words “Although this can be a devastating disease I felt such a great sense of relief to finally have had an answer after seven years of worsening symptoms and failed attempts of doctors 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.”
Sean volunteers as a speaker for the Amyloidosis Speakers Bureau, 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. He is retired and enjoys spending his time with his wife Robin…..cooking, drawing, and tending to their dogs Cassie and Julia.
Tuesday, October 15, 2024
3:30 PM – 4:45 PM PT