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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…
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…
