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Thread: Friedreich's Ataxia

  1. #1

    Unhappy Friedreich's Ataxia

    Hi Friends,

    I am suffering from a progressively degenerating disease called Friedreich ataxia. It makes me more and more dependent and seeking for support day by day. I want to be self reliant and least dependent. I dont see any hope in life ?? cant see where it is going.

    Is there anybody else suffering from ataxia on this forum. ???

    Does anyone know of any NGO o rorganization for rehabilitation in India ??

    Email me at sraj78@gmail.com with any related information

    Thanks

    Regards

    Saurabh

  2. #2
    I don't know of anywhere in India, but here is a patient's organization in the UK that might be able to advise you:
    http://www.ataxia.org.uk/
    There is also one in Ireland - http://www.ataxia.ie/ and I know there is a European one as well, so one of these should be able to give you contacts for India.
    I met a woman in Ireland recently who has had F.A. since she was young and it has progressed to the point where she is in a power wheelchair all the time as her balance and strength is no longer good. She seems to stay active/busy and as independent as possible and positive about life.
    I wish you luck in finding good support and help with your condition.

  3. #3
    Senior Member wheeliecoach's Avatar
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    I do not know of anyplace in India...but I know what it is like to have a progressive disease. I was diagnosed with Priomary Lateral Sclerosis 2 years ago. If you need to talk, feel free to PM me.
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by sraj
    Hi Friends,

    I am suffering from a progressively degenerating disease called Friedreich ataxia. It makes me more and more dependent and seeking for support day by day. I want to be self reliant and least dependent. I dont see any hope in life ?? cant see where it is going.

    Is there anybody else suffering from ataxia on this forum. ???

    Does anyone know of any NGO o rorganization for rehabilitation in India ??

    Email me at sraj78@gmail.com with any related information

    Thanks

    Regards

    Saurabh
    http://www.als-mda.org/publications/...tml#cord_blood

    Click on the link to the drug company using umbilical stem cells for ALS in patients from India and then click on their NEWS area. There is hope for many central and peripheral nerve diseases.

    Saurabh, can you tell me what is the biggest city close to you? India ia a highly populated and large place. Hate to find help in Mumbai if you are in Kalkoto or Delhi. And welcome!
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #5
    Hi Sraj,

    Like yourself, I have Friedreich's Ataxia (FA). I was diagnosed with this disease 20yrs ago, so I have had plenty of time to get used to it. Have u been recently diagnosed?

    I see from your post that u are having some problems, if u need someone to talk to then pls contact me on ThePickeledFairy@hotmail.com

    Never give up hope my friend.
    Last edited by CrystalRain; 07-10-2007 at 06:34 PM.
    There are no such things as incurables; there are only things for which man has not found a cure.

  6. #6
    I, too have FA. I live in the US, and life has been up and down for me too, but I do have hope. Read my blog at http://www.wheelingwoman.com/

    Please comment.

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