Sean Baumstark, of Sacramento, California, was diagnosed with Friedreich’s ataxia (FA) in 2007 at 25 years old. He describes misconceptions about rare diseases and disabilities that need correcting.

I wish, generally, public understood that disability shows up in many different ways whether it’s FA or something else. How we live our lives is not indicative of that condition but in spite of it. I feel like there is misunderstanding in the world of rare disease and disabilities specifically, not just FA, that people living with a rare disease can’t do certain things or can’t accomplish or can’t achieve. I wish people understood that’s not necessarily true. Disability makes us different, but different isn’t necessarily limiting. We just have a different way of going about things, and limitations are just boundaries to be navigated around and through and over, and not necessarily finite rules and lines that we cannot cross.