Husband at risk of Huntington's | Caregiver Action Network

Husband at risk of Huntington's

2 posts / 0 new
Last post
Husband at risk of Huntington's

I'm 36 and have been married to my husband for 3 years now and want to start a family in the near future. Unfortunately HD runs in his family, with his dad and aunt both having it. His dad, who is no longer with us, suffered with the disease for around 14 years. I'm terrified that this may also happen to him but we don't know if he has HD because he has been aftraid about getting tested and seeing the results.

This may be selfish of me but I can't start a family without knowing if he has HD first.  I don't want to pass it on to my children.  Can anyone advise what to do? He wants to start a family as well but he has refused to be tested.


I am 41, and my partner (52) of the last 12 years was diagnosed about 5 years ago. He waited quite some time before being tested. His mother, 2 full siblings, and 1 half sibling all tested positive. We discussed testing, but decided to wait for symptoms to appear. We figured there was nothing we could do but manage symptoms anyways, so why have it hang over our heads.

However, we were not wanting to start a family as we both had a child from a previous marriage. 

I know that my partner was terrified to get the results. We all "knew" he had HD, but that test felt like a death sentence. But I know he also lives with a lot of guilt that he may have passed this disease on to his daughter. The life he is leading now (and will in the future) is not a life he wishes for her.

I can also say, that his positive HD status removed any second thoughts of having biological children with him. For both myself and him. 

There are options out available if you partner is positive. I recommend searching family planning on the HDSA website. I also suggest visiting with a local support group or a therapist. Your feelings are just as valid as his in this issue. And keep in mind, if he is positive and it is passed on to any future children, you will be the caregiver for them all. Personally, I feel like that is a lot to expect of someone if taking the test could alleviate at least some of the demands that you may face as a caregiver, not to mention the fear for your future children.