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Huntington's Disease Youth Organization

Should I have the test when I turn 18?

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

www.hdyo.org

Q. Hi, i am nearly 17 and i am at risk of huntingtons disease. I am finding it very hard to make the decision. I feel so tempted to have the test as soon as i am 18 but i just don’t know what to do !

Katie, 17, UK

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A. Hi Katie,

Good to hear from you. Please do not worry about not knowing yet whether you want to be tested – it’s very common to be in this position (at any age). For most people the question is perhaps not so much whether or not to have a test but more in relation to the timing. If you can, try not to think of a particular cut off time in which to decide about having a test. It’s an option that is always open to you. There’s quite a lot to consider in terms of how you would deal with the information a test would provide and whether it is information that would be useful to you or get in the way of making plans etc (& this can change over time). If you would like to know more about the predictive test and also ways of coping with being at risk more broadly, you could ask your GP to refer you to your nearest genetic centre. You don’t need to be getting tested to see a genetic counsellor. They are also there just to talk to and share your thoughts and concerns with. Do let me know if you have any problems making contact with a genetic counsellor.

Rhona Macleod