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Hobbies reenergize me when Friedreich’s ataxia symptoms hit

The other day I decided to try watercolor painting again. That may sound like an extremely frustrating activity for someone who signs their name like a 5-year-old. No offense to 5-year-olds. Poor motor skills are one of the symptoms of the disease I have, Friedreich’s ataxia (FA). I’ve always…

Handling my life when it’s not easy being me

When I’m frustrated about my Friedreich’s ataxia (FA) disabilities, life has a cruel tendency to remind me how very not “normal” I am. I continually find myself in circumstances that highlight my problems or force me to be a spectator or accept help. In those moments, I just want…

This Rare Disease Day, I’m celebrating my community

Imagine standing on top of Mount Everest screaming “Help!,” but the wind is so fierce that your words blow back and no one hears you. Could people do anything if they did? That’s what being diagnosed with my rare disease, Friedreich’s ataxia (FA), felt like. My parents and…