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My girlfriend told me before we started dating that she has a possibility of having Junior Huntington's Disease. I had no idea what the heck it was. So, I looked it up and I just hoped she didn't have it---and hoped and hoped. We go to her meeting with her genetics doctor to find out the results and when I first heard about her getting tested positive it, I felt like someone knocked the wind out of me & beat the living crap out of me. I had felt like crap for a week afterward. We have very little discussed it with eachother, me and her and even with our families. It's actually brought us closer, knowing I will always be there for her when she needs me and so will our families.
I remember when we got out of the doctors office the day they told her, she said: "Now is your opportunity to run away and find someone else while you have the chance." I told her: "I am staying with you....I am not going to let this disease tear us apart. No matter how much stress we're going to go through and no matter how it is going to mess with the both of us emotionally."
We have no plans to ever separate from eachother anyhow. So, who knows what is going to happen to her. It just worries me to this day of what WILL happen to her and how it's going to get to me. I am hoping for some sort of cure within the next few years to this horrible disease because I really don't want to lose someone I love to something as terrible as this.
Hi Brandan,
Welcome to the HDYO forum, I am glad you have found us here.
Thank you for sharing your story about you and your girlfriend. It sounds like you have been very supportive for your girlfriend during what appears to have been a very difficult time for both of you.
You mention that you are worried how things will be in the future, that is a natural concern to have. Remember that it is not only your girlfriend who deserves support, it is you too. That is why HDYO's goal is to support young people impacted by HD - you are a young person impacted by HD, even though it is your girlfriend who has tested positive. We are just as much here for you as we are here for your girlfriend too.
You also talk about Juvenile HD and that your girlfriend thought she may have that. JHD is different from HD in that it happens earlier in life (hence the 'Juvenile'). I am wondering what makes your girlfriend think she may get the juvenile form of HD?
I'm really pleased you have posted on the forum Brandan, you talk about hope of a cure at the end of your post and I want you to know that there is definitely hope to be had. Research is going very well and there is genuine hope that effective treatments or a cure may be available in the coming years.
Take care for now,
Matt
Thanks so much. It means alot.
The doctor said it was juvenile. What ever that means. I just thought everyone got it early. He also mentioned she may not live past 30-ish.
Hi Brandan,
HD actually affects people of all ages, and most people get symptoms in their 30's or 40's. Juvenile HD is when someone is diagnosed with symptoms of HD before the age of 21. Juvenile HD is also affects people slightly differently than the adult form of HD.
You've clearly had a lot to take in recently. Are you and your girlfriend receiving much support?
Take care,
Matt
Hi Brandan,
Glad to hear you have support from friends and family, and also that you are supportive yourself. It can be very beneficial to be a supportive unit through what may be some difficult times. But there may also be a lot of great times to be had in the future too.
I'm sure where in the US you are from Brandan but there is support available out there for you, your partner and your family should you want it. And of course HDYO is always here.
Take care,
Matt
Again thank you. :)
I live in Michigan. I haven't done too much research of places where they have them kind of groups. But I did see that the one closest to us is in Grand Rapids.
In reply to MattHi Brandan,
The HDSA has a list of support groups available in the US on their website. Might be useful: http://www.hdsa.org/about/chapters-and-affiliates/index.html
There are also annual conventions that the HDSA hosts which are great places to learn more about HD, research, care and receive support from the community. The next one is in a few weeks in Las Vegas.
Of course, HDYO is always here too :)
Take care,
Matt
