Living With Ataxia - Online Support Group

My name is Kristina. My daughter was diagnosed with SCA7. She had 220 CAG repeats. I just wanted to offer anyone my experience with this disease. I have learned alot and have passed it on to other parents. My daughter passed on November 1,2010 at the age of 2 1/2. If you have any questions, just let me know.

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Comment by kat nd surjsca7 on January 26, 2012 at 12:51pm

Hi me and my partner had our son who also inherited sca7 he had very similar cag repeat 280 cag repeat but only  lived until 7 months old and passed away in august 17 2009 ,it is more stronger passed on from father to child as its auto dominant i found that not many doctors know to much about these conditions. we live in the uk aand know only one other family now man who has sca7 .

 

 

Comment by lakshmi singh on November 23, 2011 at 1:17am

sent you the mail ...do reply ..if u got it !!!

Comment by Jersie's Mommy on November 22, 2011 at 12:18pm
jersiegirlsmommy@yahoo.com
Comment by lakshmi singh on November 22, 2011 at 9:47am

i would love to have your email address !! i dont have children as of now i am single 25 and have sca 7 !!! 

Comment by Jersie's Mommy on November 22, 2011 at 8:24am
There is no treatment for sca7 but palliative therapy, which is keeping ur child as comfy as possible. She had pt once a week mainly to prevent contractures. If u would like my email address, im more than happy to give it to u. I can send u some links to equipment, etc.
Comment by lakshmi singh on November 22, 2011 at 12:13am

can u share the information about the treatment u have learned ...as i read in your profile page !!!  

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