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Huntington's Disease Youth Organization

My dad's aunt died of HD, could I get it?

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

www.hdyo.org

Q. My dads aunt died of HD. None of his other aunts or uncles got it. Neither him or his siblings got it. Could I get it?

Mike, Young Adult, USA

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A. Dear Mike,

Many thanks for your question. Although it is hard for me to be specific without more information about the family, it is certainly reassuring to hear that lots of your Dad’s side of the family have not had signs of HD, and this will reduce the chance of you getting it.

As you may know, HD is a genetic condition, caused by an ‘expansion’ in the HD gene (If you would like to read more about the HD gene expansion and how it can be passed on, you may find this HDYO page useful.) If your Dad’s Aunt had HD, it is possible that she inherited an HD gene expansion from one of her parents (i.e. one of your great grandparents). If so, your paternal grandparent on that side would have had a 50% chance of inheriting it (when they were born). However, if they have lived to old age without developing symptoms of HD, it will reduce the likelihood that they did inherit it (although the age at onset of symptoms of HD can be variable). Similarly, it is also reassuring to hear that your father and his siblings have not had signs of HD.

A genetic test is available that can say for certain whether or not an individual without symptoms carries an HD gene expansion, although many people prefer not to have this type of test (known as a ‘predictive’, or ‘presymptomatic’ test). I was not clear from your question whether or not your father (or other relatives) have had a genetic test, but if they have this may also clarify the situation for you.

If you would like a more accurate assessment, I would recommend seeing a genetic counsellor or doctor, who could go over your family tree in more detail. They would also be able to talk through the options regarding genetic testing. If so, this site may help you find your local genetics service.

I hope you find this information useful, and please do not hesitate to get back in touch if you have any further questions, or if you have any difficulty locating your local genetics centre.

Best wishes

Bill