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Huntington's Disease Youth Organization

My great-aunt has HD, am I at risk?

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

www.hdyo.org

Q. My great-aunt has Huntington’s Disease, I know each case is different but it seems like my grandmother is starting to show the same symptoms, she is showing a grand memory loss over the years, am I at risk of carrying this gene?? Thank you for having this space for questions.

Felipe, Young Adult, Brazil

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A. Dear Felipe,

Thank you for your question. I am sorry to hear that you are worried that your grandmother may be developing symptoms of HD.

You are quite correct in saying that HD can cause different symptoms in different people. Some symptoms are not specific to HD, and can be very common in the general population as well. If someone has certain specific symptoms (particularly the involuntary movements associated with HD), a doctor may be able to make a clinical diagnosis of HD, although usually a genetic blood test would then be done to confirm the diagnosis.

So, in terms of your grandmother, memory loss on it’s own would not mean that she must have the HD gene (lots of people without HD develop memory problems as they get older), but maybe you have noticed other symptoms in her that make you wonder about HD? Do you know if she has been assessed by a doctor or HD specialist? This would help clarify the situation for her, and also you and your family. If she does not have the HD gene, you would not be at any increased risk of HD yourself, whereas if she does have the HD gene, it would mean that her children (including your parent) would have had a 1 in 2 chance of inheriting the HD gene from her, and therefore your own chance (without knowing your parent’s status) would be 1 in 4. This HDYO article has some more information about how the HD gene can be inherited.

I hope this helps answer your question, and please get back in touch if you have any further questions about this.

Best wishes

Bill