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Huntington's Disease Youth Organization

My mum has 43 repeats - what to expect

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

www.hdyo.org

Q. I found out today my mum has huntingtons she has 43 copies of the gene yet she’s 50 and it’s not too bad yet my auntie had it come on when she was younger so I know what to expect, how long left do I have untill it gets bad

Anon

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A. Hi, thank you for sending in your question to HDYO. Sounds like it is a difficult time for you with your mum just being diagnosed with HD today, if you would like to talk email me anytime at matt@hdyo.org. To answer your question, people with HD can live for many years after a diagnosis, usually around 15-20 years, of which many can be with a good quality of life. It won’t be easy watching your mum progress over time, but you are not alone and there is some hope in research progress which is looking exciting. Enjoy your time together and make great memories.

Hope this helps

Matt