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NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA)
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Lillian O’Connor

I was diagnosed with Gluten Ataxia Disease 2 years ago. I went to every specialist and checked myself into the hospital for tests. I had a brain MRI. Every doctor said I was fine. I was so dizzy 24/7. But no doctor helped me. They said to take anxiety meds. Then I went to a holistic doctor. She diagnosed me with Gluten Ataxia. I have been gluten free for 2 years but am still very dizzy. I did research and The Mayo Clinic has docs who specialize in AC. I completed an application for an appointment but they turned me down. Sooo disappointed. Don’t know what to do. My life has been hell. Dizziness has taken over my entire life.

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

April 2022. Gluten Ataxia Disease.

How Has Ataxia Impacted Your Life?

Horrible. Dizzy ALL THE TIME.

What is One Thing You’d Like the People to Know About Ataxia?

That there is no help. None of my docs could help.

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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