I have SCA type 5 and do not know of anyone in my family of an ataxia of any kind. I have not gotten them tested for it. I dont talk to my father and my mom passed away when I was 14. What should I do?
Hi 
My parents had both passed when I was diagnosed with Idiopathic SCA, and I’d never heard of such a diagnosis in either side of my family.
I live in the U.K. Initially, I was tested for common types, and Lupus because I’d requested it, then I was asked to donate DNA for research.
About 4yrs later, research had found a link🤔 Apparently my ataxia was Recessive. Genetic but passed on only when both parents are carriers of a specific mutant gene, they remain unaffected themselves. My type is linked to Syne 1.
My Neurologist gave me no other information, so I had to research for myself ( this is by no means uncommon). At the moment, the only time I see my Neurologist is for a yearly review. Some people are inclined to think of yearly reviews as a waste of time, why bother🤔 But, these appointments allow Neurologists to follow the path of ataxia across a diverse group of individuals, it’s as important as research.
Keep in touch with your Neurologist, and log onto www.ataxia.org for reliable facts and numerous helpful links, including contact info for Support Groups. Another site giving information on numerous types of SCA, is www.ataxiacenter.umn.edu xB