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Huntington's Disease Youth Organization

If my uncle has HD and my mother doesn't can I get it?

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

www.hdyo.org

Q. If my uncle has huntingtons disease and my mother doesn’t…can she still be a carrier and pass it on to me??

Kellie, Young Adult, USA

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A. Dear Kellie,

Many thanks for your email.

I was a little unsure from your question, when you say your mother does not have it, whether you mean she has had a genetic test that confirms she does not have the HD gene expansion, or if you mean she does not have symptoms of HD.

This is quite important, as the age at which someone who carries the HD gene expansion starts to have symptoms can be very variable, so someone who does not have symptoms could potentially still carry the gene expansion, unless a genetic test has shown that they do not have it.

The average age to start with symptoms is around 35-50, but some individuals with the HD gene have symptoms that start earlier or later in life than this. The longer someone lives without developing symptoms, the less likely they are to carry the HD gene expansion, so even if your mother has not had a genetic test, the fact she is well is likely to reduce the chance that she (or you) carries the HD gene expansion, although this will depend on how old she is. If your mother does not have the HD gene expansion, you would not be at any increased risk of HD.

You may find this HDYO article helpful as it describes how the gene can be passed on in families in more detail. Alternatively, your local Genetics service would be able to provide more information if you wish, and would also be able to tailor it to your family situation. If so, this website may help you to find your local Genetics service.

I hope this answers your question, and please do not hesitate to get back to us if you have any further queries.

Best wishes

Bill