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Huntington's Disease Youth Organization

I've been showing early symptoms of HD, should I get tested?

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

www.hdyo.org

Q. I have been showing early symptoms of HD. I have had several people in my family that we’re diagnosed, or passed away from HD.  Should I get tested? And, how do I do that?

Brittany, 24, USA

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A. Dear Brittany,

If you think you might have early symptoms of HD then I think the first step should be to see a doctor in your state who has expertise in HD. They will be able to tell if you have symptoms & arrange a gene test. 

If you are not sure who your local HD specialist is then I’d contact the USA HD association for advice.

I see lots of young people at risk of HD who are concerned that they have symptoms of HD. Sadly some do, but many don’t. 

There are a few conditions that mimic HD, like an overactive thyroid, that might need to be excluded. Very often a young person who thinks he or she might have HD has been “symptom watching” and has persuaded him/herself that they have HD when they don’t. 

A gene test will tell you if you have  the gene, but it won’t tell you if have symptoms. Only a specialist who knows about HD can do that. Also, if you do have HD then seeing professionals who understand the condition & who can help you will be in your interests,

All the best for the future,

Andrew