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Marcus

My Mother was diagnosed with a type of ataxia 20 years ago, no one knew what exactly she had. 10 years ago, I started researching about my mothers illness as I knew that whatever she had, was genetically passed on. So I made some appointments but soon realised that nobody could help me as no one knew the extract gene that was affected. So I had to wait and hope that I didn’t develop symptoms. Last year, a doctor in America discovered the gene that was responsible for SCA4, one of the rare types of ataxia. My mother got tested and the results came back positive. Last week I got my results and they came back positive too. I don’t know if I have symptoms already, I am not so stable on my feet, but nothing I would worry about if I didn’t have this history. I am really scared about the future, at the moment I try to eat as healthy as I can and do sports and I just hope for the best.

When Were You Diagnosed? Which Type (If Known)?

12-4-2025. SCA4

How Has Ataxia Impacted Your Life?

My mother had symptoms since I was 10 so I never got to do a lot of stuff with her

Share Your Advice – How Can Others Support Someone with Ataxia?

Just be there.

Disclaimer: The views and opinions expressed in this story are those of the individual member and do not necessarily reflect the views of the National Ataxia Foundation (NAF). Any medical information shared in this story is based on personal experience and has not been reviewed or endorsed by NAF or a medical professional. Always consult with your own physician or qualified healthcare provider before making any changes to your care or treatment plan. 

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