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
Anamaria
A 29-Year Journey to the Truth My name is Anamaria Mitre, I am from Zalau, Romania, and I am 42 years old. If you saw me today, Read More…
Jeryl S.
My story started in 2016 with double vision and eye movements. I went to the neuro ophthalmologist who suggested fixing my problem with Yankee my Read More…
Danne Geson Winneräng
When I had my tinnitus investigated in 2007, a balance disorder was discovered. I was put in touch with a neurologist who suspected something called Read More…
Shannon
Finding Balance: My Journey to a Rare Diagnosis For years, I brushed off the dizziness, fatigue, and the way my feet sometimes seemed to have Read More…
Jorge Alonso
My name is Jorge Alonso, I am 33 years old I was diagnosed with ataxia at 31 or 30, although I really felt the disease Read More…
Abdulrahman
Hello, I’m Abdulrahman – in the beginning I was shocked, but then I digested the news, my lifestyle and way of living really helped me Read More…
