Miss June young

Hi there I am a 31 year old women and my 8 year old niece has recently been diagnosed with ataxia, she has very low mobility And uses a wheelchair now when her legs get sore, she also suffers learning difficulties and epilepsy. My mum has just been tested for ataxia as her brother and mother had been diagnosed with it a few year back. However her mother passed away before we new of anything. I was wondering if any one has any advice or information regarding this condition as the doctors didn't tell us anything and I'm unsure what to expect. I appreciate any help or advice any one would like to offer, I've never tried a forum or support organisation so unsure if they any good.

3 Replies

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  • Hi June

    Welcome to the forum. Thank you for your query.

    Please think about joining Ataxia UK. It is free of charge and gives access to a lot of information. You can either join through the website ataxia.org.uk or contact the Helpline on tel. 0845 644 0606 or email helpline@ataxia.org.uk. Even exploring the website gives rise to a lot of information. One page that you might find particularly useful is ataxia.org.uk/what-causes-a... Also ataxia.org.uk/Pages/News/Ca... Clicking on the 'blue bits' on these pages directs you to further information. One of the is a parent's guide which you might find useful given the age of your niece.

    Please feel free to ask any questions you like on this forum. There are plenty of people on here affected by ataxia who are willing to offer as much advice and support as they can.

    Best wishes

    Harriet

  • Hi June,

    Harriet has pointed you in the direction of some VERY good information/support services.

    Like you, I too was a bit sceptical of an online forum - that it would actually be any good.

    The good news. This one actually helps. There are so many people in a similar position, if not exactly, who are always happy to offer first-hand information, or even just to offer a kind word when it's needed.

    Iain

  • Dear Junie, A HUGE welcome to this site! You'll find wonderful people on here for support and understanding! Harriet (administrator) did give great references on other resources for information! As I live in the US, I'll add my two cents worth also...,ha! There's a site here called "Living With Ataxia" (discussion forum), which you may find useful. There's also the National Ataxia Foundation (NAF), that has a lot of good information! Check them out if you so desire! I was diagnosed with Sporadic Cerebellar Ataxia twelve (unknown cause, symptoms 24/7, progressive), although I had very minor symptoms starting about eight years before diagnosis. I'm 62 years young and realize the challenges of ataxia are different for a child (your niece) emotionally and physically! My best to you..., ;o)

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