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Huntington's Disease Youth Organization

I have a lot of clumsiness and my mum has HD - do I have HD?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. My mum has huntingtons, and I think I might have it due to a lot of clumsiness, is there a chance, what is the chance?

Haydon, Teen, UK

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A. Hi Haydon Thanks very much for your email. I am sorry to hear that your mum has Huntington’s disease. It is very unlikely that the clumsiness you have noticed is due to HD and it may be useful to explain why.

The most common age for someone to start with symptoms of HD is between the ages of 35-45 years, but it can sometimes happen earlier or later. Juvenille onset HD i.e. where someone starts with symptoms before the age of 20 is actually rare and accounts for less than 10% of all cases of Huntington’s disease. Typically where you see a case of Juvenille HD there is a family history of young onset and the condition has been passed on from a father - this article goes in to more detail about the way HD is passed on in families if you want to know more. The fact that it is your mother who is affected with HD together with the fact that she has developed symptoms as an adult is the more usual way that HD presents i.e. an adult onset condition.

Many young people who have a parent with HD worry at some stage about possible symptoms which most commonly turn out to be unrelated. It often helps to discuss any such worries with a genetic counsellor or genetics doctor. The nearest genetics clinic to you is Guys Hospital in London and your GP can make a referral. They will be able to take a family history and address your specific worries. Do you have people at home you can talk to about HD?

I hope you also feel you can use HDYO for support.

Best wishes,

Rhona