Hey everyone...Im just curious about what supports you guys have at the moment living in a family with HD. When i was growing up with my mum who was sick there was pretty much nothing...we had a social worker visit my mum and dad once a year, but there weren't any specific supports for my brothers and I...so I'm interested to hear what supports you get and what is helpful??? Do you know many other younger people living with a parent with HD?
Growing up HD didn't really impact my family, other than I never met my grandmother (who was positive). My aunt (deceased) and my dad both have HD, but my dad was not diagnosed until I was already out on my own.
My dad is heavily involved in the HD community here in Ottawa (Canada), he is linked into studies, has support groups, on medication and seeing a counselor.
I tested positive last January. Although I am interested in the meetings it is tough to attend because I do not feel like I fit in with all the people who are already experiencing symptoms and sometimes it is hard to face the reality of the symptoms. I do have a supporting family and boyfriend, which is always great, but sometimes I crave to find someone who had been through the testing and is around my age. I want to share hopes, fears, successes and failures with others who are possibly going through the same thing!
Hey Chels thanks for sharing your experience. Have you heard of the YPAHD in Canada? They are a great group of younger people affected by HD. I know what you mean by not feeling like you fit in at some of the other meetings, it can be really confronting and not always helpful. Do you know Brynne and Katie from Canada? I can put you in touch with them if you would like to meet other younger people in your area. They sometimes do skype calls and things! Your dad sounds very active in the HD community..good on him :-)
It’s good that now you have the internet to help and websites like this to communicate with people in the same situation as you. I tested positive at 18 and I’m 30 now and married (I met my husband skydiving which is a hobby of ours). It’s been an interesting road that’s for sure. I also was not happy with the local group.
It’s a conscious decision to be happy. Keep some good people around you to keep you strong. I consider this a free ticket to life. I feel like I have a closer bond with the special people in my life. I can choose a life style or job that caters to what I need. I never settle for anything. We make decisions together that benefit both of us. It’s a good life.
It is interesting that you both (Keebler and Chels) mention that the local support group did not suit you. This is something I've heard a lot of young people say and it seems like it could be a really big issue in terms of young people accessing support.
That is of course one of the reasons for HDYO! :)
This part of the HDA site should tell you where your nearest support group is. You can email HDA directly to get contact with the group local to you.
Hey BJ! ^^
I'm from Dallas (so not quite Minnesota, hehe), but do you know of any youth groups in the Texas area? Or, if not, could you maybe tell me a bit about your meetings? I've been thinking of maybe starting one up if it doesn't already exist/I can find anyone who'd be interested, but I'm not quite sure where to start. It would be nice to have a support group in the area for people closer to their 20s/30s, though!
Hey! Unfortunately I don't know of any groups in the Dallas area, but I do know a couple young people in Texas who might be interested. We also had a nice conversation at the HDSA convention last month and talked about starting a nationwide skype call for young people to call in once a month to talk to others. If we had something like this maybe we could find some other young people in your area that would be interested in forming a group. I can keep you posted if this takes off. Feel free to shoot me a message with your email address firstname.lastname@example.orgIn reply to dontpanic