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Huntington's Disease Youth Organization

What age is it safe to say you don't have HD?

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

www.hdyo.org

Q. My mother refuses to get tested for HD because she’s afraid. She is now in her 50’s and shes fine, by what age is it a safe age to say that she doesn’t have it?

Stacey, Young Adult, USA

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A. Dear Stacey

Thank you for your question.

The age at which individuals who have the HD gene expansion start to have symptoms can be very variable. The average age to start with symptoms is around 35-50, but some individuals with HD have symptoms much earlier, or much later in life than this. Therefore, while it is definitely reassuring that your mother has not has symptoms into her 50’s, unfortunately there would still be a chance that she does carry the HD gene expansion. There is no safe age at which it can be ruled out, although the longer someone lives without developing symptoms, the less likely it will be that they carry it.

Lots of people at risk of HD choose not to have a genetic test, and it is a very individual decision, that can often depend on lots of personal factors. Genetic Counselors provide information and support to family members at risk of HD, and are also often able to help people think through the pros and cons of testing. If you/your mother have not already done so, you could contact your local Genetics service if you would like to explore this further. This website may help you identify your local 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