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Huntington's Disease Youth Organization

At how old can you get tested for this disease?

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

www.hdyo.org

Q. At how old can you get tested for this disease?

Hannah, 10, USA

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A. Hi Hannah,

Thanks very much for your email to HDYO. Testing for HD, where someone is well with no symptoms, is offered in adulthood usually from the age of about 18 onwards. The reason the test is not offered earlier is that the onset of HD tends to be in mid adulthood (that is usually not until someone is about 35-45 years). Thoughts about testing can also change over time, so for example this week I saw someone in clinic who I first met when she was 15. At that time she wanted to be tested but then decided against as she felt it a less relevant option in terms of other things happening in her life. Other people make different choices and a genetic test can provide information that is useful to them. It remains a big decision however, and most people need time to talk through all their options and to consider how they would feel about the information a test result would provide.

I don’t know very much about your own situation Hannah and whether for example one of your parents or a member of your family has HD? If you have questions about HD or simply would like to find out more about support available to you in NY, perhaps you could ask a parent or relative you feel close to whether you could speak with a genetic counsellor? We sometimes see children of a similar age at the genetics clinic – some 10 year olds want the chance to speak on their own and for their parent(s) to join them afterwards, other times children want someone with them – an older brother/sister or parent. Either way Hannah, it’s important that you know that young people of any age can access genetic counselling – we will try to answer any questions as honestly as possible.

It’s great that you’ve found the space in HDYO to ask your question. Perhaps you find it helpful to see how much is going on in the whole area of HD? – from young people sharing their experiences to the (huge amount of) research that is going on to come up with better treatments. If you feel you have more questions to ask, please do feel free to get back in touch.

Rhona