First post

[Penny-92]

Hello everyone,

I've just joined this forum and thought I had better introduce myself. My name is Lydia, I'm 26 years old and I have FA. I'm looking forward to reading the posts on here and (hopefully) being able to say something useful in response.

All the best.

[SueMillman Partner Ataxia UK]

Hi Penny, Welcome! You will find a friendly and supportive community here and at Ataxia UK, which also runs other fora that you might interested you.

In particular we have a 16-30's group which has lots of other FA-ers. You can find their website here: ataxia16to30.org.uk/ and a closed Facebook group which you can be added to if you contact Steph Marley at our office. [e-mail].

We also have a conference coming up where the 16-30's will be meeting up for their own programme. People with ataxia get financial support to come for themselves and a carer if they need one. Check it out here: ataxia.org.uk/Event/ataxia-...

Joining Ataxia UK is free and gets you a magazine by email or post 4 times a year.

Sue

[Sharontower in reply to SueMillman]

I’ve never received a magazine yet. Please may I be put on the mail list. My husband has SCA 6

[SueMillman Partner Ataxia UK in reply to Sharontower]

Hi Sharon Did you complete the joining forms for Ataxia UK? You can find them here: ataxia.org.uk/forms/joinata.... If you did complete them, and haven't received a magazine please write to Steph Marley ([e-mail]) and she will sort it out. Best wishes Sue

[wobblybee]

Hi Lydia, welcome 🙂 My Ataxia is Idiopathic,for now anyway. And my age is ‘mature’ 😉 xBeryl

[wibblywobbly]

hi Lydia, welcome to this site. I have found it very helpful and supportive, I hope you do too

love Alison x

[Marigold12]

Hi, I am Marisa and I just joined a week ago, so all new to me too. I was diagnosed at the end of last year wkth an extremely rare form of genetic ataxia called... wait for it ... Posterior column ataxia with retinitis pigmentosa. Quite a mouthful! The RP part of I have known about since I was a child as well as the scoliosis part but just recently joined the dots and got genetic testing and thanks to a fab neurologist got the diagnosis. I am still finding my way through all of this so hopefully this form will help us both. Welcome! Marisa

[12daisy]

Hi Lydia welcome, I also have FA and I’m 39.

[Wedny1]

Hi there i just joined a few days ago and love this forum i have subcellular ataxia i hope you love this site as much as I do xx

[pollybanana]

Welcome to the forum. Lots of good advice and support here 😊

[Litty]

Welcome

I need this group (good therapy lol!). Look forward to your ideas x