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Huntington's Disease Youth Organization

My mother had huntingtons, do I?

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

www.hdyo.org

Q. My mother had huntingtons and some doctors said the disease HAD to be passed…. BUT, some said that it COULD be passed…. My question is, does it HAVE to be passed or what?

Shanda, 18, USA

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A. Hi Shanda,

Thanks for your question – and great that you found your way to HDYO! I hope you find the information on the site useful. We can be very clear that it is not inevitable that a parent with Huntington’s disease will pass the condition on to a child. The chances of this happening is 50% or to put it another way a 50% chance of HD not being passed on (another way of understanding the chances involved is to think of tossing a coin with an equal chance of it coming down heads or tails). The risk is the same for males and females and is not related to whether you look like your affected parent. You might find the attached link to the section on ‘Being at Risk’ useful http://en.hdyo.org/you/articles/61 .

Shanda, I would also suggest talking about HD with a specialist doctor or genetic counsellor who really understands about HD and who can help to answer questions for you as these arise. There is also a great deal of research going on world wide in to HD which is encouraging when thinking about the future. There is a genetic clinic based at the children’s hospital in Birmingham, Alabama, and I think they may also do an outreach clinic in Huntsville. I’ve included the link below but if you need any help getting in contact, please do email again. http://www.uab.edu/medicine/genetics/huntingtons-disease

All the best,

Rhona