I'm so shocked there is so little awareness of ataxia

Untill it affected my husband I'd never even heard of it myself and then to learn there's no percific cure I really want to do what I can to help so although I have a fear of flying im doing a sponsored sky dive for ataxia As I feel very strongly it needs to be talked about a lot more!!!

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  • Hi Paula!

    I really admire your courage in doing the skydive, good luck!

    There's nothing like doing something out of your comfort zone

    to get talked about!

    I know what you mean about the lack of awareness, it's particularly

    worrying when your GP keeps fobbing you off. But we have to

    remember it's a rare condition and they can't study everything.

    A few months ago a GP who was recently qualified told me there

    was no such thing as Gluten Ataxia. He confidently said that I

    could have Ataxia, or Gluten Sensitivity. Only when pressed did

    he consult the internet, then he apologised.

    Best wishes to you, Jay and the family! xB

  • What is awful is that I have been with my gp several years and still she hasn't really looked into FA despite me asking /telling her there is information on the Ataxia website!

    Anna

  • Hi Jayswife, that's a fantastic thing you're doing! My daughter has sufferred with Spinocerebellar Ataxia since birth and is now 17. She is still walking a little bit but is struggling, she pinballs into furniture etc and falls lots. We were told hse wouldn't be walking at all by the time she was 12 so thank God they were wrong. She is in pain most of the time and wobbles all over the place all the time but at least for now she's still able to walk.

    Good luck for the skydive!

    Best wishes

    April

  • Totally agree about the lack of awareness. I had never heard of it before. Totally admire you. Wish I was as brave as you xxx

  • Dear Jayswife, I had never heard of ataxia when I was diagnosed (eleven years ago) with it. I admire what you are doing for "the cause", as there definitely needs to be more awareness, research and clinical trials, hopefully leading to a cure for neurological diseases one day! My best to you and your husband..., ;o)

  • Hi Jayswife,

    I totally understand your thoughts, I have had ataxia for over 30 years now & awareness of it doesn't seem to have increased very much (if at all!!) during that time despite all the good of Ataxia UK. I have found that the only people who can increase awareness is those affected by it by just keep talking about it & telling everyone/anyone, telling a personal story also seems to make people listen.

    I have done lots of things trying to raise awareness as I strongly believe every little bit helps so think your idea of a sky dive is fantastic & very brave. Can I suggest that you speak to Ataxia UK asking for their help & support in publicising this as I am sure they will be able to help maximise awareness + make things easier than trying to go it alone.

    Good luck

    Brian

  • Hi Paula

    That is great news. Thank you and good luck! You are a braver woman than I am!

    Best Wishes

    Harriet

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