Hereditary ataxia?

Could anyone give me any advice or information about hereditary ataxia? I'm 18 an just been told I need tested for it as 8 people in my family has it and my mum could have passed it to me I had tests done when I was younger because I'm so clumsy and fall and bump into things a lot but the never tested for ataxia as they never knew it was in the family I also have a curved spine which I've read is a symptom of hereditary ataxia. Any info would be brilliant!

7 Replies

  • Hi B-cow3

    Thank you for your question.

    I am afraid I have a couple of questions for you. Do you know which ataxia the members of your family have? Have you had any genetic counselling?

    Best Wishes


  • I've just been told they have ataxia nothing else and no nothing's yet I just found out this morning an been thinking a lot about it mum was scared to say anything incase we all got upset all I know is her auntie, uncle and 6 cousins have it but it Hasn't got progressively worse till the were old x

  • Hi

    There are many different types of hereditary ataxia. You are correct that a curved spine is a symptom of one of the hereditary ataxias, namely Friedreich's ataxia.

    You do not have to be tested if you don't want to. Because you are 18, only you can consent to having any test. Talk it through with your Mum. I assure you she will be as worried and scared as you are. Also talk it through with your doctor as to what being tested would involve and what it would mean for you.

    There are four specialist Ataxia Centres in the UK (in London, Oxford, Sheffield and Newcastle) and it may be if you decide you would like to explore further being tested for ataxia, that you would like to go to one of these. You could ask your GP to refer you.

    Ataxia UK which is the national charity supporting anyone affected by ataxia have a helpline on 0845 644 0606 which is free and confidential if you feel you need to talk to someone else.

    Very Good Luck and if you have any further questions, however small they may seem, please do not hesitate to ask them on here.

    Best Wishes


  • Thanks Harriet, very informative. Even though the question didn't come from me

  • Hello I'm 38 male I was diagnosed 2 years ago with SCA type 2 and I would say that once you are diagnosed there are big mental consequences because now I know that I have it, it has effected my confidence physically and mentally where as before my diagnosis even though I knew maybe something wasn't right I learnt to live with my conditions. Also once you are diagnosed it's unlikely you will get life insurance. I was adviced with my kids that they should only be tested once they have established themselves with mortgages etc, though they may want to bear in mind jobs that they may need to avoid. I also think that once you know its a fact that you have to live with forever. For me personally I wish I didn't know. This is just my opinion about my situation.

  • I've decided not to get tested I'm only 18 and dont want to go through all that if av not got it and if I have then al spend the rest of my life worrying when itl hit me av read up about it and it says it doesn't affect you till your older I'm going to enjoy my life and worry about it when it comes to it! Thanks to everybody who replied and for all your help! Xx

  • Sounds a good idea to get checked. Your Gp could refer you for genetic counselling too. I wish I'd known earlier. You aren't required to share the results with anyone.

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