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Huntington's Disease Youth Organization

How long does a child have after being diagnosed with HD?

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

www.hdyo.org

Q. How long does a child have after being diagnosed with HD?

Anonymous

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A. Hi

Thank you for the question, albeit a difficult question to explore. Firstly, children getting symptoms of HD is pretty rare and equates for around 10% of all HD cases in the Western world at least. So it’s not common to see the Juvenile form of HD (JHD). However, it can happen, and when it does children will progress at a similar rate to adults. People with HD can usually function and remain independent for quite some time, a decade perhaps, before becoming more dependent on those around for care. For JHD, it can take longer to diagnose it because doctors like to rule out everything else first before diagnosing as JHD, so by the time someone is diagnosed with JHD they may have had symptoms for a while already. It may not be 10-15 years after diagnosis, it may be more like 5-7 years, it’s hard to predict. If you need any support with this question email us any time, we are here to help.

Matt