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Huntington's Disease Youth Organization

My mom is 48 and has never had symptoms, am I at risk?

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

www.hdyo.org

Q. Hi. My grandmother on my mom’s side died of HD at 51. She had five daughters, and they are all above the age of 40. My mom is the youngest at 48. Only one of them had the disease, and she has passed away at 53 years. The rest of them haven’t been tested but never had symptoms. My mom is 48 and has never had symptoms, could I be at risk?

Thank you for any helpful information. I am scared.

Darby, Teen, USA

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Q. Hi Darby,

Thanks for your email. I appreciate you have been worrying about the family history of HD and what it might mean for your mum and yourself. I’m pleased to hear that your mum is not showing signs of HD at the age of 48. It is encouraging in terms of the age at which your grandmother and aunt must have started showing symptoms of HD, however we can’t completely rule out any risk to your mum as the age of onset can vary even within the same family. So whilst it is good news that your mum is well, there would still be some risk (though less than the 50% risk your mum would have started life with). If your mum has not inherited the HD gene fault, then she cannot in turn pass it on to you, this HDYO link explains the inheritance pattern in HD. It would be possible for your mum to have a predictive genetic test which would provide information about her risk status i.e. whether or not she had inherited the HD gene fault. A predictive test is a big step, however, and may or may not be something your mum would consider for herself. Do you think your mum realises that you are scared about your own risk of HD? Would it be something you feel you could discuss with your mum? It may also be helpful to talk with a genetic counsellor who would be in a better position to tailor information to your own family situation. Here is a link to the Huntington Disease Society of America. They will be able to provide details of your nearest centre.

Information and support may help you feel less scared. If you want to speak with Chandler, youth worker, you can email her too on this page.

Rhona