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Huntington's Disease Youth Organization

Did I get tested as a baby?

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

www.hdyo.org

Q. Hi so, my grandma had Huntington’s and she had 3 kids. 1 got tested and it was negative and the other 2 did not and the one that did not get tested was my dad. My dad said I go tested right when I was born, But IDK if that was a accurate test could I still have it??

Olivia, Teen, USA

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A. Hi Olivia,

Thank you for reaching out to HDYO with your question.

In regards to your question - most doctors won’t test a baby since it is the general belief that it is each individual person’s right to choose if they want to be tested. Some parents decide to test their child while they are still in-utero (this means before they are born). This test is generally quite accurate. It may be worth getting a bit more information about what test was done from your dad. Many parents aren’t ready to be tested themselves, but want to ensure their child doesn’t have HD and, in that case, the in-utero testing is often done.

Please don’t hesitate to reach out with more questions.

Chandler