Member Stories

“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 look Read More…

My Mother was diagnosed with a type of ataxia 20 years ago, no one knew what exactly she had. 10 years ago, I started researching about my mothers illness as I knew that whatever she had, was genetically passed on. So I made some appointments but soon realised that nobody Read More…

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, you would find me enjoying the quiet joys of life. I love reading, watching movies and TV series, solving crosswords, and playing Rummy. Although I don’t drive, Read More…

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 glasses down over my nose! So much for seeing him! The issue continued and I went to a neurologist who tested me for myasthenia gravis. Read More…

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…