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Huntington's Disease Youth Organization

Do you have to have a parent with HD or can it just be in the family?

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

www.hdyo.org

Q. Ok I know i am not a young adult but i have questions and concerns about HD. I have been with my husband for 20 years. I am on my 5th baby now…..and i have custody of my nephew from my husband’s side. My nephew’s father has just got out of jail and he has HD. Do you have to have a parent with HD or can it just be in the family? My husband is 36 and i don’t think he has any signs but i am concern for my nephew.

Sara, 34, US

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A. Dear Sara,

First of all you’re very welcome to ask a question and would still be thought of as young adult at HDYO! It sounds as though you have only recently found out about the diagnosis of HD in your brother-in law? If so, a new diagnosis of HD in the family can be distressing and raise all sorts of questions. There is a great deal of information and support available and I’d really encourage you to make contact with your local genetics centre. They will be able to provide information and support not only for yourself, but for other members of the family including your husband and nephew. I’m attaching a link to the HDSA website on services in Ohio that may be useful.

You’re right in thinking that there is a risk of your nephew inheriting the HD gene fault as his dad is affected. The chances of this happening are 50:50 i.e. there is an equal chance that he will not inherit the HD gene fault. You asked whether a parent would have to have had HD and it would certainly be the most likely scenario. Sometimes however a parent may have died from other causes before the onset of HD, or looking back it is sometimes possible to recognise symptoms that may be consistent with an HD diagnosis. I’m not sure whether your husband and brother-in law have the same mum and dad and if so whether they are both alive? There is a really quite a lot of information to know about HD and the way it is inherited. Assuming your husband and brother have the same mum and dad, your husband would have started life with the same 50:50 risk as his brother. It is encouraging that he remains well, however in order to obtain accurate information it would be important to seek a referral to a genetics centre. They will start by gathering family history information, and it will be relevant to find out more about the medical history of both your husband’s parents. There are options available to both your husband and nephew looking to the future. There is also a great deal of research going on worldwide in to HD that is encouraging. I’m not sure how old your nephew is, and whether he knows that his dad has been diagnosed with HD? Again this can be taken one step at a time, and with support. You may also find the attached link ‘talking to children’ useful.

Do let us know if we can be of further help here.

Rhona Macleod