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Our youngest son Connor was born on a beautiful fall morning. He was the youngest of our three children, so he had a sister who was 7 and a brother who was 3. He was and has always been so loved and adored. When he was six months old, I, Read More…
Hello, I wanted to share with you the disease that has been in my family (my dad) : Spinocerebellar Ataxia Type 3, or for short SCA3. This illness has more than 35 different types, with type 3 being the most common. It affects the cerebellum, affects walking, speech, movement coordination, Read More…
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 became difficult to articulate certain words and it was quite slurred. This was during my mid – 20s and up to that point I was Read More…
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 to do everyday tasks like washing my car or cleaning the gutters, I cannot print or write anymore, sometimes my ability to sleep is compromises, Read More…
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 I loved working with children. I began teaching early childhood education at 18. I gradually moved to advocating for children with special health care needs Read More…
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 caused by a degenerative of my Cerebellum. I’m already using a walker in the house. Even with it I can’t walk more than about 30 Read More…
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. The next 6 months I spent my time in hospitals and rehab. I continue rehab to this day. A little better everyday. When Were You Read More…
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 diagnosis. For a long time, my main struggle was just staying on my feet. I had a lot of trouble with my balance, and because I tended Read More…
My name is Amir Hossein Bagerzade. I am 26 years old, and for nearly nine years I have been living with a rare genetic disease. You may wonder why, after nine years, I am sharing my story now. The reason is simple: I live in a northwestern province of Iran, Read More…
“So what we think you have is something called autoimmune cerebellar ataxia.” Cool. Cool. Cool- No idea what that is. Countless blood tests, a few MRIs and a couple hospital visits later looking for answer to all the issues I suddenly had but the answer I got was something I knew nothing about. Even the Read More…
