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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 Ataxia. I have had poor balance my whole life and have had difficulty with certain games and sports. Music and art were my salvation. I Read More…
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 minds of their own. I’d trip over nothing, bump into door frames, and occasionally lose my balance mid-step. Friends would laugh and call me “graceful Read More…
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 since I was 15 years old, before I played soccer, suddenly I fell I began to feel limitations when I ran so I stopped playing, Read More…
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 in overcoming these hardships When Were You Diagnosed? Which Type (If Known)? October 2023 How Has Ataxia Impacted Your Life? It has been challenging and Read More…
Living and Dying with Spinocerebellar Ataxia Type 7: A Carer’s Perspective Affiliation: Husband and primary carer of patient with confirmed SCA7 (ATXN7 gene, 10/49 CAG repeats) Background Spinocerebellar Ataxia Type 7 (SCA7) is a rare, autosomal dominant neurodegenerative disorder characterized by progressive cerebellar ataxia and cone-rod retinal dystrophy. The following Read More…
http://youtu.be/sYccDzT25eY?si=f6GkonkY4FvsyFHy The video above is from Maitreyi’s personal YouTube channel, in which she discusses her experiences living with Ataxia. Mature topics are discussed, viewer discretion is advised. When Were You Diagnosed? Which Type (If Known)? Toronto, ON, Canada – SCA Type 2 How Has Ataxia Impacted Your Life? Negatively. This all Read More…
When I turned 20, I started to notice something was different about me. I had a brain MRI, which showed that I probably had Ataxia. My mom and I went to the doctor for further examination, and he confirmed it. To be 100% sure, they performed genetic testing, which confirmed Read More…
I am a Registered nurse who recently went on disability for Spinocerebellar Ataxia. My family tree is full of members with this same illness. I want to spend the rest of my life helping others to eventually find a cure or in whatever capacity that may be. When Were You Read More…
I have a beautiful wife and 3 grown kids. I have always been very active, running track and cross-country in high school and road races in my early and latter years, I have always loved to run. I worked in the produce dept for a grocery chain for almost 36 Read More…
Note: Aude submitted her story in French. ChatGPT was used to translate her submission. The translation may not be accurate. We will include her submission in French, followed by the English translation in italics. Bonjour à tous je viens d être diagnostiquée pour la maladie de Canvas la semaine dernière Read More…
