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Huntington's Disease Youth Organization

What is the average age for symptoms to show? Is there a cure?

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

www.hdyo.org

Q. My grandad died of huntingtons disease about 4 years ago, my mother today i’m unaware if she has it but i know she hasn’t and doesn’t want to be tested but before i’ve heard her mention things before which makes me think she might have it starting, i know her sister has it and it makes me wonder if i have it and what is the average age for the disease to start really showing symptoms and is there a cure for it yet?

Holly, Young Adult, UK

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A. Hi Holly,

Thanks for your email. I’m sorry to hear your granddad died of Huntington’s disease. As your grandfather had HD, your mum would have started life with a 50% risk of developing HD. As your mum has not been tested or clinically diagnosed with HD, we would consider your risk is half that i.e. 25%.

I’m not sure what you have heard that makes you worry that your mum could be starting with symptoms? Have you been able to discuss your concerns with anyone else? Even if your mum was to start to develop symptoms of HD it is not inevitable that you would. The risk would then be 50% i.e. there would be an equal 50% chance of not inheriting HD. This article explains how HD is passed on in families.

The average age of starting with symptoms is 35-45 years. You asked about a cure for HD and unfortunately there is not a cure yet. There is a great deal of research going on worldwide to come up with disease modifying treatments - treatments to try to interfere with the disease process in some way by delaying onset or slowing down progress. This year a number of disease modifying treatment trials for HD are starting to get under way which is very encouraging. In the news section of hdyo there is an interview with Dr Ed Wild about HD research trials or for more information, you can get the latest research updates at HDBuzz.

You may wish to consider making contact with your nearest genetic centre for a discussion in person? It can be an opportunity to learn more about HD as well as access some support. Do let us know if you have any more questions we can help with here.

Best wishes

Rhona