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Huntington's Disease Youth Organization

Does the oldest sibling get HD?

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

Q. Hi, I want to ask somethings about HD. My grandma had it and she had 3 daughters. Now my mum is suffering from HD, and she was the elder one of the 3, Has it something to do to be the elder?

I have an elder brother and I want to know which percentage do we have to have HD.

I want to know if there is any medical way to avoid my kids to inherit the gene, if someday I decide to have a family myself.


Lola, Young Adult, Spain

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A. Dear Lola,

Thank you for your email. There is no link between where you are in the family (elder, middle, younger) and your risk of HD.

If your mum has a clear diagnosis of HD, then every child has a 50% risk of carrying the gene.

People who carry the gene can make choices about their own families to prevent the gene from being passed on. Techniques which are like “in vitro fertilisation” can be used so that only embryos which do not carry the gene are implanted. This is called pre-implantation genetic diagnosis(PIGD). Also, a foetus may be tested early in pregnancy and the pregnancy terminated if the foetus carries the gene. However, not all of these techniques are acceptable to people on ethical or religious grounds. PIGD does not always work (I think it works about one in three times).

I hope I have answered your question and I’m sorry for the medical terms.

Best wishes

Hugh Rickards

Last updated: January 22, 2014 17:00