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Huntington's Disease Youth Organization

My dad, aunt and uncle have HD, will I?

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

www.hdyo.org

Q. My grandma passed away from huntingtons correa in 2009 my dad,aunt and uncle all have Huntingtons.

My dads symptoms are not nearly had bad as my grandmas symptoms ever were and he’s now 46 years old my grandma was 52 when she passed away not from huntingtons but from cancer she was completely bed ridden tho. What are my chances? I have 1 baby boy and am currently pregnant so I’m concerned for them

Cori, Young Adult, USA

A. Dear Cori,

Thank you for your email.

I was very sorry to hear that your grandma passed away following Huntington’s chorea (also known as Huntington’s Disease; HD) and cancer. You mentioned the differences between how HD had affected her, compared to your dad. This is actually quite common – we know that HD can affect people differently, even within the same family. It is also true to say that treatment for some of the symptoms of HD has improved over the years, so this may also explain why your grandmother’s symptoms were more problematic in the past.

To come to your main question, about the chances of you developing HD, this will depend on which copy of the HD gene (a gene called huntingtin) you inherited from your dad. You may find the following HDYO article helpful, as it describes how the gene can be passed on in detail: Being at risk. Genes come in pairs, and we expect someone with HD to have one copy of normal size, and one which is larger than usual (called a CAG expansion). When that person has a child, there is an equal chance which huntintin gene is passed on. Therefore, a child of someone with HD would usually have a 50% (1 in 2) chance of carrying the huntigtin gene expansion, in which case we would expect them to develop symptoms of HD. However, as we said above, the exact symptoms (and age at which they start) can be very variable.

I think it is very natural that you are concerned about your children. Their chance of carrying the huntingtin gene expansion is half your chance. So, they would currently have a 1 in 4 (25%) chance of having the expansion (or, to put it the other way, a 3 out of 4 (75%) chance that they won’t). Even if they do carry it, it is likely that they would be very many years away from when the illness would affect them. It is also possible that better treatments will also become available by then.

Many people at risk of HD find it helpful to see a genetic counselor or doctor, who could give more information about HD if you wish, as well as help you deal with some of the difficult emotions that you may be feeling. The NSGC website may help you identify your local genetics service.

I hope this is helpful, and please do not hesitate to get back to us if you have any further questions, or if you have any difficulty getting in touch with your local genetics service.

Bill