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Huntington's Disease Youth Organization

My 3 year old son's father has HD, is he at risk?

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

www.hdyo.org

Q. I have a 3 year old son and have just found out that his father has been diagnosed with HD. His mother passed away 2 years ago, she also had HD and one of his sisters has it also and was diagnosed some years ago. I would like to know if my son is at risk of developing HD, and if I can have him tested to see if he does carry the gene? Thank you

Stacey, Young Adult, UK

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A. Dear Stacey,

I am sorry to hear that your son’s father has been diagnosed with HD, and I can imagine this must be a worrying time for you.

As you may have already realised from his family history, HD is a genetic condition that can sadly affect multiple members of a family. When someone with HD has a child, there would usually be a 50% (1 in 2) chance that the child would also carry the HD gene expansion, in which case we would unfortunately expect them to develop symptoms of HD at some stage in their life. Equally, there is a 50% chance that a child would not inherit the expansion, and if so they would not be at risk of HD. You may find this HDYO article helpful, as it describes how the gene can be passed on in families in more detail.

Although it can be quite variable, the average age to start with symptoms of HD is around 35-50, so it is very unlikely to have any effect on your son’s health for many years, even if he did inherit the gene expansion. For this reason, predictive testing for HD is not generally offered until the age of 18, so that the individual can decide for themselves if/when they want to know this information.

I am sure it will be very difficult for you to know that your son may be at risk of HD. However, I hope it will be of some reassurance to you to hear that there is a lot of research going on to try to develop better treatments, and therefore we are very hopeful that there will be more to offer by the time your son is older, even if he has inherited the gene expansion.

You may find it helpful to have an appointment with a Genetic Counsellor, who could discuss things in more detail, and answer any other questions you may have. I notice that you live in Leeds, and so you could ask your GP to refer you to your local genetics service, which is based at Chapel Allerton Hospital.

I wish you all the best, and please do not hesitate to get back in touch if there is anything else we can help with, or if you have any difficulty accessing your local genetics service.

Bill