My grandmother died prematurely from ataxia when I was just a baby, 26 years ago. Now today, my aunt has severe SCA and my mother is also starting to show symptoms. I also am very concerned for my cousin, my brother, my sister, and myself; not to mention, my newborn nephew who may develop it later in his life.
When Were You Diagnosed? Which Type (If Known)?
My aunt was diagnosed two years ago with the onset of symptoms. My mother has not yet been officially diagnosed. SCA.
How Has Ataxia Impacted Your Life?
I did not think I was at risk for this disease; it was a held belief in our family that it only affected women. But that’s not the case, of course. So now my wife and I are anticipating a future where she will have to take care of me. But we already plan to take care of my mom, AND we take care of my wife’s sister who was born severely premature and profoundly developmentally disabled.
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
Laura
It all started with a change in my speech. I honestly thought I may have suffered a stroke whilst sleeping or something because it suddenly Read More…
Sandy Wilson
I was diagnosed with SCA1 in 2010, five years ago I had to stop work due to it becoming too hazardous, I lost my ability Read More…
Rochelle
Hi, I’m Rochelle I am 60 years old mother of three adult children and grandmother to 3. All of my life even as a teenager Read More…
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…
