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Huntington's Disease Youth Organization

I'm not sure if I should get tested

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

www.hdyo.org

Q. My mum has HD and when I am 18 I was think of getting tested, but I’m not sure whether I want to or not because it might have a big impact on my life, what is your advice?

Hollie, Teen, UK

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A. Hi Hollie

This is one of the biggest questions you can face. A lot of teens have this desire to get tested when they turn 18 as right now they are not old enough to do the testing process. When we ask those same people when they are 18 if they want to test, many will have changed their minds feeling that it wasn’t the right time for them. You are young and your thoughts will change for many things as you get older, including your thoughts of testing. Be mindful of that now and give yourself time to consider if you actually do want to be tested or not.

You are right to think that testing is a big decision. It is life changing but at the same time normal life will go on. Advice I give to everybody about testing is that if you’re not 100% sure you want to get tested then you are not ready. Be sure because you can’t change it once you know your results. Not only is the process itself an emotional rollercoaster, but once you find out your results you have to live with that. A negative result, meaning no HD for you, is not so bad to handle but still has some surprising feelings for people to cope with. Testing positive is hard to cope with. You have to cope with your results for the rest of your life. It’s not just that moment you hear your results, it’s 10 years after that when you’re living your life, you have to be able to function with this knowledge that you will get HD at some point and it’s not easy. So be ready for that mentally. This should be a part of making your decision of if you are ready to test or not.

Other factors to consider are if it’s the right time. You may be going to university or starting a career etc. Do you want to go through the testing process at this particular time? Is there a better time for you later on in your life that still works in terms of your reasons for getting tested? Think about all these things before making your decision. You can also speak with a genetic counsellor about testing for HD, without starting the testing process itself which is really useful just to chat about your thoughts on testing etc.

I hope this helps

Matt