Kyle Bryant is COOL

What I think about Kyle? Kyle Bryant is a person with Fredreich’s Ataxia and because of his activity he become someone like a celebrity. He is a very active person on the topic of ataxia and helps others learn more about the disease. I think it’s great and I wish there were more people like that. Talking openly about your illness is not easy (I understand it a little more now, while I am becoming a kind of public person) so Kyle deserves admiration for it. Although my ataxia is very different from his (in SCA there are no heart

My image of ataxia. Ataxia Notes #3

When I was a child, my parents showed me the world. As I grew up, my mother showed me ataxia. When I got the diagnosis, my first image was the one I knew because of my mother. I really didn’t want it and I was rebellious, but when I thought about ataxia, she was what I saw. My disease was her. I saw that she is weak and helpless, and that’s what I felt. Uncertain of the future. Unable to plan. Ashamed, reluctant to talk. And I was like that too. Little, ashamed, vulnerable, scared, and insecure. Inside me. That

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