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Huntington's Disease Youth Organization

My memory is not as good as I was, should I test for HD?

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

Q. I used to be able to retain a lot. Almost everything I heard, read, what others said. Now as I’m growing into adulthood I’m noticing that those abilities are decreasing dramatically.

Knowledge I used to have isn’t as accessible as it used to be. I’m constantly jumbling words as I speak, like my mind knows what I want to say but my mouth can’t form the words correctly. Should I get tested for Huntington’s?

Brian, young adult, USA

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A. Dear Brian,

Thanks for the email.

Problems with retaining information are not typical early signs of HD. Neither is jumbling up words. However, people have lots of reasons to take a HD test. If you are “at risk” for HD (i.e. you have a close relative who has proven HD) then there may be reasons to take a genetic test even if you have no symptoms at all. This is called a “predictive test” and some adults take this test to help them make plans for their lives. There are potential downsides to taking a predictive test, such as problems with insurance. Genetic counsellors are good people to discuss the pros and cons of predictive testing with.

The remaining issue is why you are having trouble with retaining information and getting words muddled. There are all sorts of possible reasons for these symptoms. In my experience, the most common reasons for these symptoms in a 21 year old are anxiety and information overload but there is a really long list of possible reasons. HD would come a really long way down that list.

Best wishes and thanks for the question.

Hugh Rickards

Last updated: May 12, 2014 10:24