# Rare case SCA (5)

**URL:** <https://forum.livingwithataxia.org/t/rare-case-sca-5/5492>\
**Category:** General\
**Created:** [January 2, 2017, 3:21am UTC](https://forum.livingwithataxia.org/t/rare-case-sca-5/5492 "2017-01-02T03:21:24Z")\
**Posts on this page:** 2\
**Page:** 1

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**Author:** ![Duck\_Hunter](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/duck_hunter/32/1781_2.png) [@Duck\_Hunter](https://forum.livingwithataxia.org/u/Duck_Hunter)\
**Post date:** [January 2, 2017, 3:21am UTC](https://forum.livingwithataxia.org/t/rare-case-sca-5/5492/1 "2017-01-02T03:21:24Z")

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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?

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**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\
**Post date:** [January 2, 2017, 10:23am UTC](https://forum.livingwithataxia.org/t/rare-case-sca-5/5492/2 "2017-01-02T10:23:10Z")

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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](http://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](http://www.ataxiacenter.umn.edu) 😊xB