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Huntington's Disease Youth Organization

Why don’t people know about HD?

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

www.hdyo.org

Q. Why don’t people know about HD?

Zoe, Child, England

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A. Hi Zoe Thank you for your question, it’s a good one! The main reason people don’t really know or haven’t heard about HD before is because it is a rare condition. 1 in 8,000 people in the UK are thought to have HD, it is much less common than Cancer or Parkinson’s. So unless it is in your family it is not likely you have seen much of HD in the media. Another point is that sometimes people who are in families with HD don’t want to talk about it, they feel embarrassed about HD. This is called stigma. A long time ago Cancer was the same as HD is now, people viewed it with this stigma, they didn’t want to talk about it. But now people are very open about most Cancers as the public understands more and treatments give people more hope and more strength to be open about it. With HD, many still don’t want to talk about it because there is not enough treatments yet. But this is changing and I think your generation will see this change.

Matt