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Sharing stories: Matthew

In this step, Matthew shares his experience of presymptomatic genetic testing for Huntington’s Disease, and the impact this has had on his life.
My name is Matthew Ellison. I live in Coventry, which is not in London. I’m 26, married now, and my family has a background of Huntington’s disease. I reached out to a genetic counsellor because, well, with Huntington’s disease you’re at risk 50% that you might have it. My dad had Huntington’s, so I’d watched him progress for a long time. Most of my childhood I’d watched him progress with Huntington’s and knew that I was at risk for a long time. And I decided when I was about 18, I started thinking about testing quite a lot and my own risk, and that’s when I decided that I wanted to get tested. And I was quite adamant that I wanted to be tested.
So that’s why I reached out to the genetic counsellor at that point. I know that most people who are at risk for Huntington’s don’t get tested, like about 90% of people at risk choose not to get tested. I think for me personally, I wanted to know what was going to happen in my future so that I could plan around that. And it wasn’t really about doing things differently whether I tested positive or negative. It was more about, if I tested positive, do things a bit quicker, maybe, and speed up the plan a little bit.
That was really the main reason why I wanted to get tested, because there’s not a huge amount you can do in terms of treatments at this point for Huntington’s disease. So it really is a case of, do you want to know if you have it or not. And for me, I felt better that I knew if I had it or not. And so that’s why I got tested. The result I got was positive, meaning it was not so positive, so it was bad news. And when you find that out, that you’re at risk for Huntington’s disease, and then you find out that you’re definitely going to get it, it’s a very surreal moment when you get given that news.
And it’s so quick at times as well because you just go in and you sit down, and then straightaway it’s like, OK, sorry, it’s bad news, positive. And I remember my mum was with me, and she was already crying. As soon as she said sorry, it was just like, [WOOSH]. And I was trying to stay strong and just digest the news. I think I’d spent a long time preparing myself for the fact that I might be positive. And I felt that preparing for the fact that I might be negative would be a lot easier. So I was spending a lot of time focusing on, what if I’m positive? How am I going to deal with that?
And so I’d done as much preparation as I felt I could do. But really it’s never really enough to take in all that information and just kind of accept it like that. It takes a lot longer to accept that kind of information. After I got tested, the first day felt very surreal. That’s the best way to describe it. It was just kind of a complete blur, because you’re getting news which is going to change the way you view your life from here on out. So it’s really huge news.
I think for the next two or three weeks, I didn’t really take it in. I knew my results, but I wasn’t really able to digest it much. Then a few months down the line, you’ve had a bit more time to think about things. And I think about three to six months it took me to really I would say adjust and also kind of accept where I am right now and accept that it was positive. And I kind of let myself just be a little bit depressed for a few months as well, and just not do too much in life, because I felt that’s what I needed at that point. And that when I’m ready, I can pick myself up.
And when I know what I want to do from here on out, then I can go off and do it. And that’s really what I tried to do. And when I got tested, I really wanted to use it as motivation to go on and just do I wanted to do in life. Since I got tested, I had a desire to really try and help young people in HD families. Because I was looking back at my own life– I was about 19, 20 by that point. I was looking back at my own life, and it had such a huge impact on my life growing up with my dad having Huntington’s.
And I’d had a lot of problems, a lot of stress, doing years of caring for my dad, and doing all sorts of things. And the impact on my education, I’d left school when I was 13 and kind of had been in and out of education since then. So that was really a huge impact on my life, and I never really put two and two together and thought that HD’s the impact here. But after I got tested, 19, 20, I kind of looked back and reflected on things, and I kind of, whoa. HD’s had a huge impact on my life.
And then I started realising that there’s a lot of other young people out there in similar situations who are going through a lot of things and not getting an awful lot of support actually. And the focus wasn’t really on supporting young people in HT families. It was on supporting the person that has HD, which you’d expect that. But young people also need a level of support as well. So I set about creating an organisation called HDYO, which is the Huntington’s Disease Youth Organisation. And we set it up in February 2012, so it’s been a few years now. It’s my full-time job now, and we get hundreds of contacts from young people around the world.
We have a website which has loads of educational information for young people to learn about HD. It’s available in 10 languages so young people everywhere can access it and learn about HD and then hopefully feeling comfortable enough to contact us and reach out for support so that we can help them or sign post them somewhere else. So, it’s been really good. But really, my own experiences and going through testing, that was really the motivation to get involved and do something like HDYO.

Matthew shares his experience of presymptomatic genetic testing for Huntington’s Disease, and the impact this has had on his life.

Talking point

In light of Matthew’s experiences, do you feel any differently about the challenges that you discussed in the previous step?

Many thanks to Matthew for taking part in our course. This is an open access course and the families and patients who have kindly contributed to this course will also have access to your comments.

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