Sean Baumstark, of Sacramento, California, was diagnosed with Friedreich’s ataxia (FA) in 2007 at 25 years old. He shares how FA works and manifests differently from many other rare diseases.

One thing I’ve noticed and I feel like makes [Friedreich’s ataxia] rare — of course, I guess it depends on what type of disease you’re comparing it to — but FA will affect everybody differently, and FA will affect every element of our body except our brain or our cognition or cognitive ability.

So, although it will impact eyesight and vision issues and speech and it will cause me to talk slowly and slurred — you know, put me in a wheelchair someday and cause all kinds of exterior symptoms — it would cause an average Joe or a “normal human being” to think there’s something wrong physically and mentally.

That’s one thing about it that I think is unique and maybe frustrating at the same time: There is no cognitive, or maybe I should say very little, cognitive impact [even though] it certainly seems on the outside that it’s very destructive both internally and externally.