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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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J. Ochs

I’m a wheelchair user and have been for the last 10 years. I was diagnosed with Acute Myeloid Leukemia in 2010, my doctor identified me as having the flit 3 gene which makes leukemia tough to beat without a bone marrow transplant. In the beginning of 2012 I had my first bone marrow transplant at the Duke University hospital in NC. In the summer of 2013, I relapsed while visiting Buffalo, New York. My relapse presented as total organ failure. The doctors said that I was too sick to move to my home in SC. I stayed at Roswell Park Hospital for 9 months. High doses of chemotherapy was administered to keep the leukemia at bay and to prepare me for a second bone marrow transplant. The high dosage of chemotherapy poisoned my brain giving me Cerebeller Ataxia which destroyed my motor skills and balance. I was put in a medically induced coma for a month while doctors worked on a lung infection that I had developed. A tracheotomy was preformed and the scar tissue from the track caused my esophagus to close and now I’m unable to swallow. I’m now in remission but remain unable to swallow, rely on a feeding tube and am a wheelchair user. Doctors refer to me as a medical mystery and there is no known cure or treatment.

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

Cerebeller Ataxia diagnosed August 2023

How Has Ataxia Impacted Your Life?

My ex husband divorced me because I became infertile and disabled.

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

Chemotherapy is not the answer and often causes more harm to the body than good.

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

Repetition is the best way to retrain your body.

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…

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