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Huntington's Disease Youth Organization

Do I need counseling to get tested at 18?

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

www.hdyo.org

Q. If I want to get tested at the age of 18 when would I have to counseling

Amy, Teen, UK

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A. Hi Amy,

Thank you for getting in touch with HDYO.

Although the recommendations are that predictive testing is only offered over the age of 18, you can access genetic counselling at any age. I see from your email that you are living in England, and each region in England has a genetic counselling service. If you wanted to find out more about predictive testing, as well as other options and perhaps ways of thinking about the choices you face, you could ask your GP for a referral. At the appointment you would have the opportunity to discuss your individual and family situation in more detail.

In terms of what is involved in having a test, it usually involves at least two counselling sessions prior to the blood test. The reason for having pre-test appointments is to have a chance to prepare and consider things like timing, the pros and cons of testing and information about the possible test outcomes. You might find it helpful to look at sections in HDYO and also Predictive Testing for HD.

I hope this is helpful Amy, and please get back to us if we can be of any further help, or if you have any difficulty accessing your local genetics service.

All the best

Bill