spinocerebellar type 13

[babygirl123]

Does any one know anything about this type of ataxia?

just been told I have this, but with no family history of ataxia let alone genetic ataxia I am confused,.

Marion

[HarryB Administrator]

Hi Marion

I am afraid I know little about SCA 13. My advice would be to phone the Ataxia UK Helpline (0845 644 0606 or email [e-mail]) who will be in a better position to help.

With regards the genetics there may have been a spontaneous mutation of the gene in you that causes SCA 13 and as it is spontaneous in you, there is no family history.

Harriet

[babygirl123 in reply to HarryB]

Thanks Harriet for replying,

I have spoke to the Ataxia nurse at Sheffield and she said the same, about it being spontaneous and she said it is very rare, there are not many people that have been diagnosed with this type.

I will contact the help line as well to see if they have any different info on it.

[ladyntramp]

Hi Babygirl, I was diagnosed with Spinocerebella when I was 50 (am now 69) but must have been born with it as I have been told it is hereditary. It comes from dad's side of the family and does not favour 1st, 2nd or 3rd born, nor does it favour boys or girls. In fact it is very random, but there are several members of the family with one form of ataxia or another. Looking back over different areas of my life I can see the presence of the ataxia, especially in areas where coordination or speed were important factors. I have looked into this condition either on Ataxia UK or Google. I have had to put up with people thinking I'm drunk (from my early 20s) and I can tell you this is not pleasant when you don't drink, or very rarely have just 1 glass. I have had to give up a lot, but where possible I just find another way of doing the things I love. I have a very supportive husband and surround myself with supportive and caring friends. I love to laugh so I watch as many funny films and TV programs as I can. I like to exercise my brain: quiz shows, crosswords and the like. I play games on the computer which actually helps with hand/eye coordination. There are many things which we can do and unfortunately those we can't do, but I don't dwell on the negative. Since I have had to resort to a walking stick or walker when I am out I have noticed how helpful people can be when they can actually see there is something wrong. Just remember that every cloud has a silver lining and even if you have to look hard for it you will find it. Just stay positive, stay happy and always keep smiling - life really is good. Barbara.