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Huntington's Disease Youth Organization

My mom isn't showing symptoms, can I get HD?

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

www.hdyo.org

Q. My grandma had HD. My mom has not been tested but is not showing any symptoms. Can I get HD at my age or when I am older even if my mom doesn’t?

Beth, Teen, Canada

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A. Thank you for your question. I am sorry to hear that your grandma had HD, and it is understandable you are wondering about your own chance of getting HD. However, it is good to hear that your mom isn’t showing any symptoms.

The short answer to your question is that if your mom doesn’t have the HD gene, you can’t have inherited it from her (as the gene cannot ‘skip a generation’). The age at which symptoms of HD develop can be quite variable, (the average age is around 35-50), but the longer your mom goes on without symptoms the more reassuring we could be that she (and you) won’t be at risk.

You also ask about getting HD at your age. I would be keen to reassure you that this would be extremely unlikely, as onset in childhood (called ‘juvenile’ HD or JHD) is rare, and there is only really a risk of JHD when there is already a family history of HD happening in young adults, and also usually only occurs when the HD gene is passed on by a male parent. For all these reasons, I would not consider you to be at risk of JHD. Even if you have inherited the HD gene (which as things stand would be around a 25% (1 in 4) chance), it is very unlikely that you would have any symptoms for many years.

I hope this helps answer your question, and please get back to us if you have any other queries.

Best wishes

Bill