Young diagnosis

[Regina75]

My name is Regina. I am 23 years old and I live in Cambridgshire. I was diagnosed with Ataxia at the early age of 19. Are there any other young patients?

[lindadoc]

my son is 19, diagnosed when he was 12 with CA, look up the 16-30 Ataxia facebook page and you'll meet other young people.

[Regina75 in reply to lindadoc]

Ok I will do that thankyou

[SueMillman Partner Ataxia UK]

Hi Regina, We have an active group of young adults aged 16 - 30 who have helped us to develop this website ataxia16to30.org.uk/. They also have a closed Facebook site which you can access by contacting Stephanie Marley at Ataxia UK office ([e-mail]). People meet up at our Annual Conference which this year is the weekend of 21st October and being held at the Radisson Blu, Stansted Airport - quite near you! Bookings will open later in the year.

Additionally this year, we are intending holding an away weekend for young adults (with a parallel event for their parents) in July - it won't be obligatory to bring a parent! This will be announced directly to people who belong to Ataxia UK and also advertised on our websites, so you could also book for that.

People have made quite strong relationships within the group and we're now finding that friendships have been forged which are operating quite independently of Ataxia UK!

Best wishes, Sue

[LJH3 in reply to SueMillman]

Hi Sue, I am 32 and have FA but obviously fall just outside this group. Are there any other groups etc? I am currently ok-walk funny but unaided but would like to socialise with others that understand my condition. Many thanks, Laura

[Sherena in reply to LJH3]

Hi Laura, I am 31 diagnosed with sca 3 for just over a year. I have been looking for someone within my age range myself.

Sherena

[LJH3 in reply to Sherena]

Hi Sherena! It would be great to chat-my emails [e-mail] !

[Loubie82]

Hi regina75 I was diagnosed with cerebral ataxia at the age of 19 am now 34 x

[Sherena in reply to Loubie82]

Hi, whI have sca do you have? Am an sca 3 sufferer myself.

[Regina75]

Thankyou everyone for all this information you've all been very helpful x

[JPsMum]

My son is 18 and newly diagnosed x

[Regina75]

Hi where about in the UK do you live? Yes we are very rare indeed.

[Penny-92]

Hi Regina- I'm 26 and have FA. Let me know if you have any questions.

[Regina75 in reply to Penny-92]

Hi Penny, I’ve just turned 25 2 months ago so it’s nice to know that we are in similar age group. How does your ataxia affect you? Docs say with Friedricks it’s life limiting is that true? X

[Penny-92 in reply to Regina75]

Hi Regina - that's quite a question and I think it'll require a lengthy answer so I'll message you x

[Penny-92]

29 is definitely still young... at least, it better be as I'm nearing 27.

[Regina75]

Cool. I’m just an hour from you in Cambridge. I’ve been London, a lot of traffic! Hate it!