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Huntington's Disease Youth Organization

Are people aware that they might be at high risk of HD?

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

www.hdyo.org

Q. Are people aware that they might be at high risk of HD?

Jimmy

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A. Hi Jimmy,

Thanks for writing in with your interesting question to the teens section. I wonder if you are asking whether the children of a parent who is affected with HD are always aware that they are at risk? Please do email me again though if I have misunderstood the question. It’s fair to say that not all people who are at risk of HD are aware of this information. This is for a range of reasons – they may have lost contact with their birth family and be unaware of an HD diagnosis or parents may have chosen not to tell their children (usually this is very well intentioned through wanting to protect children, but can make things more difficult later on) or the diagnosis of HD has not been confirmed in the family. Helping families to communicate information about HD is a big part of what genetic counselling and sites such as HDYO are about.

Could I ask what prompted you to ask the question Jimmy? If you want to email again, please do.

Rhona MacLeod