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Huntington's Disease Youth Organization

Does everyone with the gene get symptoms?

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

www.hdyo.org

Q. Even though you are positive for the gene, does that mean you are for sure going to develope symptoms?

Kierstan, USA

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A. Dear Kirsten,

If you have the gene for HD then one day you will get symptoms. The problem is that no doctor can currently tell you when you will get symptoms or what they might be (e.g. chorea vs depression/anxiety vs memory problems).

Typically people with the gene get symptoms between 35 & 55 years old, but HD can come on earlier or later. I have just diagnosed a man with HD at 94. He was well until 92.

It’s important to realise that having the gene is not the same as having HD. To have HD you have to have symptoms whereas people who have the gene & who are well are normal until they get symptoms of HD.

If a person does not have the gene then they cannot get HD,

Andrew