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Huntington's Disease Youth Organization

Is it possible to get tested with no symptoms?

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

www.hdyo.org

Q. My dad was diagnosed with Huntingtons disease at 29 years old, he’s now 47 and refusing to eat or drink, he just stares into thin air and can barely talk :( it’s so heartbreaking and I’d like to know if it’s possible to get tested even though I have shown no symptoms as my dad was diagnosed young

Monica, Young Adult, N. Ireland

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A. Dear Monica,

Many thanks for your email. I am very sorry to hear about your dad.

In terms of your question about testing, it is possible to have a genetic blood test which would be able to show whether or not you carry the expanded gene which would cause Huntington’s disease (HD). As you have no symptoms, this type of test is called a ‘predictive’ test – it shows whether or not you will be at risk of developing symptoms of HD at some point in the future (although it cannot say at what age symptoms would start). There are pros and cons of this type of test, and if you would like to explore this option further, it would be best to see a Genetic Counsellor, who could go over this in more detail and offer support around your decision, as well as arranging the blood test if you do decide to have this. Predictive testing always involves several appointments to ensure people have plenty of time to consider all the information.

I notice that you live in Northern Ireland, so to access your local Genetics service you would just need to ask your GP to refer you to them (the Genetics service in Northern Ireland is based in Belfast).

Please do not hesitate to get back in touch if you have any further questions, or if you have any difficulty accessing your local Genetics Service.

I wish you all the best,

Bill