Hi my boyfriend recently found out that both his grandmother and father are HD positive. His grandmother was symptomatic starting at 70. His father does not show symptoms but unfortunately is suffering from another terminal illness. His father's CAG count is 40. We've been dating for about 2 years and talked about marriage and children. After reading much information about the disease, I'm very concern about our future. I've asked him to get tested so we can at least know what we are facing, but he was advised by family members to not test yet. The reasoning is that if he were to test positive, it would negatively impact his access to health and life insurance. He was told to wait until he got married, established these financial foundations, and then get tested. It's been very difficult for me to imagine my future with him, with the potential of this disease. I love him but I fear I may not be strong enough to take care of him. Any feedback would be greatly appreciated.

I don't think it can impact health insurance anymore, but his family is correct in that it will make him uninsurable for life insurance and for long term care insurance. If he is considering testing, he would want to purchase these ahead of time...he can always cancel later. The price isn't super high in your 20s (but I mean, it's not cheap either, if you don't have job).

Personally, I wouldn't want to get married or have children before testing... I want to make sure my boyfriend is fully aware before commiting to me, especially at such a young age. So I totally get where you're coming from there. Caring for an HD spouse can be a hard future to have to consider.

If he found out recently, take some time to think about it and talk about it. You've only been together for 2 years, you don't need to get married right away. When it comes down to it, testing is a personal choice that nobody can make for him.

You have every right to be concerned about your future together. While it may not be necessary to get tested right now, I would definitely get tested before having children. As far as marriage goes, I suggest you do all of your research about HD before making a commitment. Think about what YOU want for yourself. It sounds selfish, but you have a choice in whether or not you want to spend the later years constantly taking care of someone who can't take care of themselves. I won't lie to you, it's hard. Sometimes too hard. My father has it and its very painful to watch someone you love go through something like that. You may not think you're strong enough, I sure didn't think so in the beginning, but you just have to take it day by day. Not every day will be terrible, there will be good and bad days, as with any other relationship. I wish you the best of luck.

My reponse to this would be if you really love this person don't let the testing issues get in the way. The Grandmother did not get sick until her 70's and the dad's CAG is 40 so I think time is on your side to find a cure before it effects you. I agree that testing now can negatively effect medical records too. If he came from a family with younger onset, I would be more concerned.

Pam

It came from his father's side, so his CAG repeats could be very different from what his father has. If it's from the mother's side, it's more likely to stay in a similar range if positive.

Thank you so much for your responses.. It's been difficult confiding with my friends and family when most are not aware of the seriousness of this disease...

When my boyfriend presented the information, he was under the assumption that because his grandmother and father both had late onset, that he would also experience the same if tested positive. However, as Noni mentioned and from what I've been reading, CAG expansion occurs more frequently when the gene is passed from father to child as oppose to mother to child. Which, if he does test positive, exacerbates my fear of it passing to our children... I suppose we can find alternative ways to having children... I don't understand why his parents insist that he needs to get married first, then purchase life/health insurance, in order to test. Perhaps I'm missing something obvious here? I'm 29 and he is 28. We're at that age where we are seriously considering settling down. He tells me he wants to be fair to me...and that I don't have to go through this if i don't want to. I want to be with him, i just want to know what I'm getting myself into...

Thanks for reading.



Edited 1 time(s). Last edit at 11/12/2012 06:13PM by hopefulstar.

My oldest is your ages and married. Yes, it should be seriously considered when it comes to having children. Will there be a cure? It's promising but not a sure thing. Sorry if that isn't encouraging but I think about this with my children. A long term committment should be exactly that. Talk things over, look at options and see what you both can live with. Love does some strange things. It's mostly good. Keep perspective.
Mike