- 4 years ago
- Wedding: July 2015
This week my husband found out his grandmother has been diagnosed with Huntington’s disease. He’d known his great grandmother had it and his grandmother’s sister, but his grandmother didn’t show syptoms and wasn’t diagnosed until a later age and literally found out a few days ago. Apparently, this means my husband’s mom has a 50/50 chance of having it. If she does, my husband has a 50/50 chance. (If she doesn’t, then he definitely wouldn’t as it’s only genetic.)
I admit I really have never heard of this disease before and my intial Google searches are pretty sobering. When he first began telling me about it last night, I really didn’t worry too much (people can develop strange diseases all the time, right?), and I felt bad for him but couldn’t understand why his mom would even hesitate to go through genetic testing to see if she has it. But as I’ve read more about how awful and debilitating it is once symptoms begin, I feel I understand the seriousness of the disease much more and the hesitation to choose to know if you have it (because if you do have the gene you will develop it, and it’s usually fatal within 20 years but those 20 years become sort of a hellish life).
Anyway, I was wondering if anyone here knows much about it or has had personal exposure (or even has it)? Husband brought up the concern about how this might affect us and choices about having kids, but that’s not my priority concern right now. I’m more concerned about supporting him mentally and emotionally and trying to understand and learn about the disease because I’ve never heard of it or seen anyone affected by it personally.
I don’t know if I should encourage testing or not and let him decide. Either way, I’d be there for him, so it’s not like that matters! but I do, today, sort of wish he’d do testing and find out for my own selfish reasons because I want to know if this is something we will have affect our lives someday — and as I’m typing, yes, it would be good to know if we need to consider options like IVF (because apparently they can control for that gene without telling him if he had it or not). But I also feel like it’s his decision and I don’t know if it were me how I would act.
Apparently, most people (including his great grandmother and her other daughter) develop symptoms in their mid-30s to early 40s. But his grandma didn’t show signs until mid 70s. I guess, I know this is still selfish on my part, but if it’s something that could affect our life in the next 3 years even, I’d like to know.
Wow, sorry–that got long! Any experience/suggestions/insights/advice would be welcome and much appreciated!