At 26 years old, I was diagnosed with having an extremely rare genetic disease, Pompe disease. This is a disease not many know much about.
I expected my physician to at least have the dignity to research Pompe disease privately, instead of in front of me.
Pompe disease contributor Bruce CampbelI realized his diagnosis was a chance to help his doctors become better at diagnosing and helping patients like him.
I was racing at a top level when I started experiencing occasional episodes of extreme muscle pain, which sometimes prevented me from completing a race.