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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…
As a child I experienced hypnogogic states REM dysfunction and night terrors. As I go older I developed sleep attacks and falling. I went to a sleep specialist and was diagnosed w narcolepsy/cataplexy. I’ve the next few years, I lost my back ability. Then I developed Myoclonic seizures. My medication protocol was changed. (sleep disorder) Then my gait changed with periods of aphasia. Read More…
I am Lucas Marins, Brazilian, 31 years old. My grandfather died with ataxia SCA3, my aunt is completely paralyzed already, my mother is 64 years old and has SCA3, suffering with no balance, severe difficult to Walk, insomnias, slight difficult in speaking and other symptoms. Myself, I was diagnosed with Read More…
Saga of a CHAIR Prajakta Samant and Amit Patil When we hear a word “chair”, the first thing that comes to an Indian’s mind is electoral seat in politics. But don’t worry—I’m not going there today. To hell with politics. I’m here to talk about a very different kind of a chair. My mother was a teacher. As students, we would sit on benches while she sat on a big, sturdy chair. I used to Read More…
