I am Spanish, I am 30 years old and I am a carrier of SCA3 ataxia. My grandmother and my aunt died due to the disease and my mother uses a walker. I still have no symptoms but I have infinite concerns and curiosities about my illness.
When Were You Diagnosed? Which Type (If Known)?
SCA3. 10 years ago.
How Has Ataxia Impacted Your Life?
The impact I am suffering is the uncertainty of not knowing how ataxia is going to affect me, especially considering that I want to get pregnant and I don’t know how the disease can develop due to pregnancy hormones.
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
William Tartaglia
My story started about four years ago. It has been a long road. Finally on the 13th of August 25 I was diagnosed with Ataxia Read More…
Sarah FitzGerald
In June 2024, I had a massive hemorrhagic stroke caused by an AVM. I was 23 at the time and working out at the gym. Read More…
Luís Frija
I’m 50 years old from Portugal and work in the contact center industry from home. My journey with Cerebellar Ataxia really began in 2018 when I received my Read More…
Amir
My name is Amir Hossein Bagerzade. I am 26 years old, and for nearly nine years I have been living with a rare genetic disease. Read More…
Jacqueline Ambur
“So what we think you have is something called autoimmune cerebellar ataxia.” Cool. Cool. Cool- No idea what that is. Countless blood tests, a few MRIs and a Read More…
Judith
As a child I experienced hypnogogic states REM dysfunction and night terrors. As I go older I developed sleep attacks and falling. I went to a sleep specialist and was diagnosed w Read More…
