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Huntington's Disease Youth Organization

When can I be tested? How long does it take?

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? How long is the process?

Mia, Teen, USA

Ask a question

A. Hi Mia,

Thank you for reaching out to HDYO with your question. My name is Chandler and I’m the Youth Worker at HDYO. I’m here if you have more questions or need support.

Someone must be 18 to get tested for HD. Deciding to get tested is a big decisions and doctors agree that someone should be an adult before making that decision. The length of the testing process varies somewhat depending on the testing center you use. Generally, it consists of about three appointments. In the first you meet with the team (this usually involves a social worker, a genetic counselor, a neurologist and a psychiatrist). The second appointment is generally the blood draw (although if you can always request follow up appointments from any of the specialists if you would like one). Then it takes about 3-4 weeks for the lab to process the blood and for you to get your results. Those should always be given in person. The clinic will also want you to bring a support person to all the visits. This can be a family member, a friend or a significant other.

Does HD run in your family? Are you beginning to think about testing? If so, there is lots of support available for you. I’m always happy to chat more or answer any other questions you may have. Please don’t hesitate to reach out!

Chandler