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Huntington's Disease Youth Organization

I don't want to get tested - what are the options for having children?

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

www.hdyo.org

Q. I am at risk of Huntington’s but only by 12.5%. My great-grandmother died of it at the age of 56 but as far as I know, my grandmother is 67 without symptoms and my mother is 45 without symptoms. My doctor says my risk is very low but I don’t want a genetic test because I don’t think I would be able to cope if I was given a positive result. My question is regarding having children. I am in a loving relationship and my partner definitely wants to have children one day. I do too, but feel guilty because of my risk factor. So, I have two questions - am I being too cautious/paranoid about it all as my risk is low? Secondly, do you think I would be allowed to adopt a baby with my partner given my at-risk status?

Amy, 20-25, UK

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A. Hi Amy,

Thanks for your email. It is good to hear that grandmother is well at 67 years without symptoms. You’re also right about the way HD is passed on (although your own risk is actually considerably less than 12.5% if your grandmother is completely symptom free at the age of 67). You mentioned that you’ve already spoken with your doctor about HD, but I wonder whether you’ve also had the opportunity to talk to your mum about your feelings in relation to having children? I appreciate it’s not always easy to talk about HD related concerns, and you may not want to upset your mum. On the other hand she may not realise that it is something you have been concerned about in relation to starting a family. Your mum may also be in a position to know more about your grandmother’s attitude towards HD and whether predictive testing is something she would consider for herself. You may wish discuss these issues with a genetic counsellor who would also be able to talk through your options, including adoption. I’m not sure which country you are living in Amy, but if you need help getting access to a genetics clinic, please do email me again.

I would not say you are being over-cautious Amy but there are very favourable things about the history, particularly if your grandmother remains in good health.

Do let us know how you get on and whether there are any other questions we can help you with here.

Rhona Macleod