Massachusetts-based Jean Walsh was diagnosed with Friedreich’s ataxia (FA) 40 years ago at 19 years old. She shares about lesser-known yet pressing issues that challenge many people with FA.

Aside from the mental health thing that I keep harping on, I think that if people could understand fatigue a little bit more, that would be awesome. Because a symptom of FA is also fatigue and fatigue can be quite debilitating, and people think that if you get a good night’s sleep or take a nap, you’re gonna feel better. But that’s not the case; in the case of FA, it’s not helpful actually. So just more understanding about symptoms and that mental health stuff, that you’d be — I have a master’s in social work, so I have a little bit of expertise I can say this with: You’d be really abnormal if you were diagnosed with FA or any chronic disease and you weren’t depressed for at least a little while.