Newly diagnosed

[Princesspoppy]

First post! My son 15 years old has been diagnosed with spinocerebellar ataxia SCA6 which seems very young according to the information I’ve been given. Is there anyone else who has this diagnosis as a child?

My son suffers with awful neuro fatigue - is that common with ataxia?

[ww-wibblywobbly]

Fatigue seems to go with all ataxias.

15 does seem very young to me, but I'm no Dr and I'm only going by my research and people's posts on here. I think they can start at any age, but certain types are more prone to start later in life. I don't know much about sca6 in particular. Maybe someone with sca6 will know more.

I take a two hour siesta every day. I actually get into bed. If I don't do this I can't function. Since starting these regular siestas I find that I can cope much better. I think we have to make adaptations to our lifestyle.

I wish your son the best of luck. How is he coping with his diagnosis? 15 is such a difficult age anyway.

There are quite a few younger people on this site, who could probably offer advice.

Take care

Alison xx

[cocofrance]

Hi, my son too was diagnosed at 15, although he has AOA2. He is now nearly 20. We have recently found out that his younger brother (13) has the same diagnosis, diagnosed earlier because we knew the signs. Luckily our daughter is okay (21). When the condition is so, so rare, and even then you only have a one in four chance of being affected if both parents are carriers (my husband and I have had genetic testing done and we are carriers), to have two children out of three affected is a hard blow, as you can imagine. I'd be very happy to "chat" about experiences as have found it hard to find parents in a similar situation. Wishing you all the best and stay strong.

[Litty]

Welcome xx

So young. I have SCA1, and my afternoon nap is essential. IF he is sociable there is a young group I think x

[Trinity1948]

I feel so sorry for you and your son. I have had SCA 6 diagnosed 20 years ago but with my family history and much research it would appear to be a late onset type .Information from Ataxia U.K. is very helpful.