Real Life Ataxia Stories

My name is Linda, I am 33 years old and I was born on May 23 1987, in the Park Lane Clinic Johannesburg South Africa, on my Gran’s birthday. I...

As part of the Ataxia Aware Project, we are sharing personal accounts of those suffering from Ataxia or other rare conditions. We want to provide a safe space for people...

I was diagnosed in December 2013, though I was misdiagnosed for several years prior. I feel very badly that misdiagnosis of ataxia is still going on with so many people....

For the past six years, my summer vacation in the last week of July was taken by participating in this little ride called RAGBRAI which stands for Registers Annual Great...

Quality of life and social support: a mixed methods case study of adult living with rare genetic skin conditions. A blog by Sondra Butterworth

My name is Mark Desa. I'm from Ontario, Canada - just outside of Toronto. I have ARCA1 (or Autosomal Recessive Cerebellar Ataxia type 1). This is my story.

My name is Elise, I am 31 years old and was diagnosed with spastic ataxia in 2011, at age 23. I didn’t know it then, but now, after eight years...

My name is Darcy & this is my story "Life with Ataxia" my journey to diagnosis. I was born July 26th 1992 & I was considered a developmentally delay child....

I’m going to tell you something that’s going to shock you to the core; having ataxia isn’t easy in any way, shape or form. Are you surprised? The loss of...