Sean Baumstark of Sacramento, California, was diagnosed with Friedreich’s ataxia (FA) in 2007 at 25 years old. Asked about overlooked realities in life with Friedreich’s ataxia, he shares about fatigue’s toll.

Overall, awareness efforts are strong across the globe. One thing I don’t feel like gets enough attention — of course it’s maybe minor and I understand why — but for me personally, it’s the fatigue and what goes into that. It’s such a big deal for me. Of course, you know, spinal issues and heart issues are threatening in many, many ways. So I’m not downplaying those. But for me, I wish there was more talk about how energy-depriving FA can be and how it just destroys our ability to stay active, or hinders our ability to stay active and get things done. ‘Cause that’s incredibly frustrating for somebody that wants to get a lot of things done.