My name's Lauren my name is Mel and we've been together five years
my name's Amy
and I'm Matthew we've been together for five years now yeah five long years I'm
I'm Kristin I'm 23 I'm Thomas Gordon I'm 25 years old and
we've been together for first six years my name is Andrew and we've been
together three years. And my name's Rachel, shall we do that again?
We talked to four young couples to find out how HD affects their lives together
My mum's in the early stages my dad has HD and also my sister has HD as well my mom was
diagnosed about 10 years ago now my mum has HD she started displaying symptoms
when I was in early high school the first time I spoke about HD with Matt
was about two months after we'd started seeing each other I wanted to tell him
about it before he met my parents I was very nervous to try and get to help
someone understand it it's very difficult to do I didn't really know
anything so it was hard to sort of talk about it and put my like opinion on it I
think it was a really difficult conversation for Andrew to have, I could see
that he was struggling while telling me about it but I really appreciated how
honest he was about it and that he could trust me with it I didn't know anything
about the illness at all and then after I did some research I quickly realized
like how sort of bad it is and how little people know about it so you know
I was quite shocked it was pretty heartbreaking news right when I first
met her mum it was not strange but she warned me she won't really
talked to you. Actually, she did speak to me quite a bit did she she's
more of a just one-liners and when she did say something to make me cry from it
I think she was more nervous than I was
Two of our couples decided to get tested for the HD gene
when I was about 16 I've done a lot of reading about HD and I kind of had in my
mind that I would want to be tested and just for peace of mind for me for me
really to plan my life I met Matt in the process told him about my plans which he
fully supported I think it was bothering you wasn't it they're not knowing and
that she couldn't deal with not knowing it was a big shock but I've got lots of
support especially from Matt my friends and like my dad it was a big it was a
huge thing yeah but it didn't bother you no I think we dealt with it really well
we always spoke about it which really helped so any problems or worries I had
we always spoke about my decision to get tested was something that we both talked
about a lot before I even started counseling or anything like that he
would come back from appointments and he'd got told something new and
trying to process it was like we did that together but again that was quite
tough and and the final appointment was particularly tough when we did get the
result
and two couples decided that they wouldn't get tested yet
I've decided I don't want the test and I don't want to know so therefore we live
in our lives as if but it's not there we're just trying to get on with our
lives and like normal like a normal couple rather than having this big cloud
over us Kristen knows that I want to get tested
I do eventually when we look to have kids I do want to get tested the thing
that worries me about is obviously I can get tested for it and say if I do come
back positive then obviously there's stuff in place that we can do like IVF
and stuff like that but the thing that worries me about that is it's invasive
and it's going to be invasive for you as well as it is for me and that's invasive
both of ourselves got to make sure that it's not just about me it's got to
be something that you're willing to do I think we've both sat in web kind of
Center is something that we would look at
we are currentlyand in the process of having IVF and with the PGD we knew that
was something that we definitely wanted to do just to eliminate any
possibility of our future child having HD if there's something I can do to
prevent it from going any further in my family then I would do everything I can
to stop it
We asked if they had any advice to other couples facing the same issues
you can still live a completely normal life with HD and we're
getting married we're going to have babies so it you can live just a normal
life just communication and honestly I think that is the biggest piece of
advice I would give anyone because the fact that we've always talked about it
and we've always been so honest it's helped our relationship because we've
always just talked about everything don't let it hold you back if I am
affected by and I do test positive it's never going to stop me from doing the
things that I want to do
And finally, we asked how they felt HD has affected their relationship overall
I think HD has had a positive impact on our relationship and it just goes to
show how committed Matt is to me. it's made us much closer yeah definitely like
I feel I know you more and also got for the family and that as well we've had to talk
more and communication is a big part and honesty is a big part of a relationship
because it's has to be from the start so just think it made our relationship
stronger dealing with all of that it was one of the hardest times wasn't it yeah
we got through it so it's only made us stronger I would totally agree with that
yeah it's made us stronger in a way and some kind of odd way, but is has
Thank you to all the couples who took part in the video.