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Huntington's Disease Youth Organization

Can you hold out your tongue in the early stages of HD?

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

www.hdyo.org

Q. Can one hold out his tongue in the early stages of HD?

Faye, 14, Texas

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A. Dear Faye,

One off the tests that a doctor does when assessing a patient with HD is to ask them to hold out their tongue. People with chorea of the tongue may have trouble holding out their tongue. The test is part of the UHDRS, the major way doctors measure motor function in HD.

In my experience most people with early HD can hold out their tongue quite well or normally. That is, severe difficulty in holding out the tongue is most often seen with advanced HD.

There are lots of other reasons, unrelated to HD, which can make holding out the tongue difficult or impossible. That is, difficulty in holding out the tongue alone doesn’t mean that someone has HD!!

If I make a diagnosis of HD it’s based on a total assessment of mood, mental function and motor function, including chorea. To put it another way, someone with early HD would have lots of other problems apart from difficulty holding out their tongue.

Andrew Churchyard