Skip to content

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)
 SIGN THE PETITION

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. 

What is Your Ataxia Story?

As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.

Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community. 

Recent Member Stories

Sly F

Hello my name is Sly. I’m 33 years old. Started to show symptoms at age 21, diagnosed at age 25. Fun fact: before I got Read More…

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 Read More…

Marybeth Barker

Shortly after returning from a once in a lifetime vacation to Turkey in 2010, at age 58, I began to experience odd neurological symptoms and Read More…

Neyveth Duarte

My name is Neyveth Duarte and my dad was officially diagnosed with Ataxia earlier this year. My dad is my hero and he is going Read More…

Adam Nelson

I grew up in a small & rural town of about 3,500 people in central Minnesota. I was raised in a blue-collar middle class home, Read More…

Translate »

Join the Ataxia community today!

Become a free member for exclusive content from NAF.