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Huntington's Disease Youth Organization

My father died at 56 without signs, could I have HD?

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

www.hdyo.org

Q. Good afternoon, my father’s family, at least the majority of the members, have developed HD by the time they were in their thirties, fourties; however, my father died at 56 due to an accident and, until then, he never showed signs of this disease, so we believe that he didn’t inherited it. Do my brothers and I have the chance of having inherited it? Which doctor and which exam can we see and do to know this?

Natalia, Young Adult, Brazil

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A. Dear Natalia,

Many thanks for your question. I was very sorry to hear that your father died in an accident, and that members of his family had HD.

Because your father did not have symptoms of HD into his mid 50’s, the chance that he carried the HD gene will have reduced, compared to the chance when he was born. However, the age at which someone with the HD gene develops symptoms can be very variable, even within the same family. The average age of onset of symptoms is around mid 30’s to mid 50’s, but sometimes people with the HD gene expansion develop symptoms much earlier, or much later in life.

Therefore, although it is very reassuring that your father did not have symptoms, it does not completely rule out the possibility that he carried the HD gene expansion, and so there could still be a chance that you/your brothers inherited it. It is difficult for me to more specific about what the risk is without knowing more details about the family history, and if you would like to find out more it would be best to try to see a Genetic Counsellor or Genetics Doctor, who could discuss this with you in more detail, as well as talking through your options regarding testing, should you wish. I am sorry that I am not sure how you would need to go about this in Brazil – in the UK individuals in this situation would ask their local doctor (GP) to refer them on to their local Genetics Service.

HDYO: Natalia, we would recommend contacting your national HD Association in Brazil: ABH

I hope this information is helpful, and please do not hesitate to get back in touch if we can be of any further help.

Best wishes

Bill