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Huntington's Disease Youth Organization

How old do we have to be to have an HD test?

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

www.hdyo.org

Q. How old do we have to be to do tests to find out if we are positive or negative? And do we have to do anything prior to having the tests?

Angela, 16-17, Australia

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A. Hi Angela,

Thanks for your email to the teen section of HDYO. The predictive test recommendations are that predictive testing is offered from 18 years. 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 anticipated) and can potentially impact many areas of your life. It’s very understandable that you would want to find out more about what is involved in testing and perhaps whether it is an option that you wish to consider for yourself. I would encourage you to make contact with the genetics clinic in Sydney – you can do this now, and certainly don’t have to wait until you are 18 to request an appointment (let me know if you would like help getting in touch). At a genetics appointment you can expect to meet either a genetic counsellor 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 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. 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 we can be of more help on the subject

Best wishes

Rhona