I have a genetic disorder called Batten Disease-CLN2. Doctors don’t know why I didn’t start showing symptoms until I was in my forties- this usually only happens to very young children. There is no cure but there is a treatment for the type of Batten Disease I have. I had a port placed in my head a year ago so I can receive enzyme replacement therapy every two weeks. No one knows what other symptoms I will have- right now I have Ataxia and use a walker or wheelchair to get around. This type of genetic disorder affects the bodies ability to get rid of waste so they build up in cells all over the body. The buildup causes seizures, vision loss, problems with thinking and movement, and eventually death. There is no cure.
When Were You Diagnosed? Which Type (If Known)?
May 2022
How Has Ataxia Impacted Your Life?
I can no longer walk unassisted.
What is One Thing You’d Like the People to Know About Ataxia?
Having Ataxia has changed the way I thought my life would look like. Things are getting harder to do everyday.
Share Your Advice – How Can Others Support Someone with Ataxia?
Please don’t stare! And don’t be afraid to come up to us and ask questions.
How Has NAF Helped You or Your Family?
I was first misdiagnosed with Spinocerebellar Ataxia and that’s when I joined NAF. They guided me to a huge amount of information on Ataxia and I also was able to find a support group online.
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
Cameron Dingerson
My name is Cameron Dingerson, and I have a rare form of spinocerebellar ataxia: SCA11. The impetus for me sharing my story is the upcoming Read More…
Valentina
Todo empezó a los 9 años cuando estaba en el colegio y la profesora y mi mamá se empezaron a dar cuenta que levantaba los Read More…
Denny
My name is Denny and I am 71 years old living in a small town in Northern Minnesota. I have had a diagnosis of Ataxia Read More…
Liliana Haefliger
One day, about 25 years ago, I suddenly saw double after the second sip of white wine. Then I started seeing double not only when Read More…
Dušan Stojanovich
“His Light Endures”: Honoring Dušan Through Art and Advocacy By Dr. Nanette Presswell My partner Dušan was an extraordinary person—deeply creative, endlessly curious, and full Read More…
Marius
My Ataxia Journey: Sailing Uncharted Waters My name is Marius, and I live in Romania. I’m 64 years old, and I’ve always been an active, Read More…
