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Huntington's Disease Youth Organization

Could I be developing symptomps at 17

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

www.hdyo.org

Q. My dad has HD and I’m only 17 and I’m scared that I’m already developing symptoms, as I looked them up, is this possible for me to develop the symptoms of HD at my early age?

Joshua, 17, UK

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A. Dear Joshua,

Thanks for writing in – before directly trying to answer your question it has to be said that most individuals at risk of HD worry at some stage about whether or not they may be developing symptoms of HD. One of the reasons is that early symptoms of HD are not specific to the condition, so for example, mood changes, a tendency to be clumsy etc are common amongst us all, but take on a different meaning when you have a parent with the condition.

I don’t know from your email how old your dad is and how long he has been affected with HD. It is possible to start with symptoms of HD at 17, but such an early onset is quite rare and even more unusual without a history of very early onset in the family (the average age at onset of HD is mid-30’s to mid-40’s). You didn’t mention Joshua what particular symptoms you have read about that worry you. If things are difficult at home or at work for example, it may be that you are finding it hard to concentrate. The point I’m trying to make here is that there are often a number of possible explanations for any symptoms that you are worried about. I’m sure it would help to talk through your concerns with a professional who has specialist knowledge of HD. Would you be willing to talk to someone at your nearest genetics clinic? They would be able to discuss your concerns more fully by taking account of the family history and the specific symptoms you have been questioning. You could, if you wished, also use the appointment as an opportunity to talk about other things you may find relevant e.g. local support for young people/participation in research etc.

I’m really glad you wrote in Joshua – many teenagers I meet have had similar worries themselves (most often these turn out not to be HD related). It’s much better to be open about these kind of worries rather than to bottle them up. Do let us know how you get on.

Rhona Macleod

Hi Joshua,

To add to Rhona’s response, if you would like to get in touch with your local genetics clinic or further support then we can assist you with that and help you make contact.

Take care,

Matt (HDYO)