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Huntington's Disease Youth Organization

My grandma and dad had HD, do I?

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

www.hdyo.org

Q. My grandma had hd and was bed ridden and passed at 50 i believe.she had 4 kids my dad (56)bed ridden and my aunt (40) deceased got hd my aunt had 2kids one has hd one doesnt .

my question is I am 37 yrs old and havent seen any signs but i worry everyday about getting hd what are my chances and is there any golden age that i dont have to worry about it anymore.

thanks for any help

Robert, Young Adult, USA

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A. Dear Robert,

Thank you for your email. I am sorry to hear that the family history of HD is causing you a lot of worry, although this is very natural in the circumstances.

Unfortunately I am also sorry to say that there isn’t really ever a golden age when we could be 100% sure that you will no longer be at risk of HD. The reason for this is that the age at which different people who have the HD gene start to have symptoms can be quite variable, even within the same family. As you probably know, the average age to start with symptoms is around 35-50, but some individuals with HD start to have symptoms earlier or later in life than this. It sounds like your relatives have all had a relatively early onset, but we could not be certain that this would necessarily be the same for you if you did inherit it. Having said all that, the longer you live without symptoms will reduce the chance that you have the HD gene.

Some of the variability in age at onset is linked with the size of the HD gene that the individual carries (the ‘CAG’ repeat size – see this HDYO article http://en.hdyo.org/eve/articles/50 for more information about CAG repeats), as we know that people who have a larger CAG repeat size can sometimes (but not always) have an earlier age of onset. BUT the repeat size is only half the explanation – so knowing the exact CAG repeat size is not really very helpful in predicting the age of onset of symptoms for any one individual. There is lots of research going on to investigate what other genetic factors, as well as possible lifestyle/environmental factors, modify the age of symptoms, so in the future it may be possible to predict the age of onset of symptoms more accurately.

I hope this helps answer your question. If you haven’t already seen a Genetic Counsellor, you may find this helpful at some stage as they could discuss this further and also they may be help you to think about ways of managing your worry about developing HD. I notice that you live in Ohio, and this website may help you locate your nearest Genetics Centre.

Please do not hesitate to contact us again if there is anything else we can help with.

Best wishes

Bill