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Huntington's Disease Youth Organization

Is JHD common?

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

www.hdyo.org

Is JHD common? I am worried that my at risk children may get JHD, their mom has recently been diagnosed with HD. She’s only 34 yrs old. Should I be worried? - David, 36, USA

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A. No, JHD isn’t very common, even among families affected by HD. Probably only 5-10% of people with HD develop symptoms before the age of 20 years.

It is important to remember that children are changing all the time, and sometimes if you know that they are at risk of developing HD you might worry about whether some of these changes you see might be caused by them showing early signs of HD. Worrying about small changes you see in your child is very normal if you are the parent of a child at risk of HD, and in most cases there is another explanation for those changes. If you didn’t know that HD was in the family, you would probably just see the same changes and not worry about them.

However, if you continue to be concerned or things seem to be changing for the worse over a period of time, then you can always speak to a doctor. For example, you could speak to your family doctor in the first instance, or a neurologist/geneticist.

Helen Santini - JHD Advisor