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Huntington's Disease Youth Organization

How old do you have to be to get tested?

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

www.hdyo.org

Q. How old do you have to be to get tested for Huntingtons? And how long do you have to go to counseling before you can get tested?

Zoe, Teen, USA

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A. Hi Zoe,

Many thanks for your question. The recommendations are that predictive testing is offered from 18 years of age. The reason for setting a recommended age is the general recognition that it is a very big step (often people who have been through testing comment that it was a bigger deal than they first thought) and can potentially impact many areas of your life.

If at any stage you would like to find out more about what is involved in testing and perhaps whether it is an option that you would like to consider yourself, I would encourage you to make contact with your local genetics clinic. You don’t have to wait until you are 18 to request an appointment for an initial discussion (let me know if you would like help getting in touch with them). At a genetics appointment you can expect to meet either a genetic counselor or doctor who will take account of your family situation and particular questions or concerns you may have in relation to HD. For example I’m not sure from your email whether you have recently found out about HD or whether you have grown up knowing about it for many years.

In terms of counseling prior to the test, there would usually be at least two sessions prior to the blood test, but the exact number will depend on the individual’s circumstances and wishes. 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. Most of the teenagers we meet in the genetics clinic here who are initially curious about predictive testing, often decide for themselves not to rush in to testing when they’ve had the chance to have an open discussion about their own situation and alternatives for coping with their family situation/being at risk.

Let us know if you have any further questions, or if we can be of more help.

Best wishes

Bill