Real Voices interview: Matt Ellison

Meet Matt, who is living with the prospect of developing Huntington’s disease

What do you do?

I’m 21 and a full-time caregiver for my dad, who has Huntington’s disease.

What is Huntington’s disease?

Huntington’s is a genetic disease that causes gradual deterioration of the brain. It can affect all ages; there’s a juvenile form that occurs in children as young as five. My dad first got symptoms when I was at primary school. They were very mild at first, and it seemed like a good thing to me because he was home all the time and I saw a lot of him. When I was 12 he started to get really bad. He’s 54 now and in the late stages: he’s unable to talk, walk or eat.

How has Huntington’s disease affected your life?

It is very difficult growing up in a family with Huntington’s disease. My dad’s illness means that I found out about Huntington’s early in life, and my mum was very open about everything. I didn’t really think about it in terms of my own risk until I was 18 – I don’t know why, it just hit me then that I needed to face it.

How does the testing process work?

I asked my GP to refer me to a genetics team. They see you every month for six months to check how you’re coping with the process, then you get tested. In June 2008 I found out I was positive for the mutation. It was a surreal day, really strange. I was glad to find out, but at the same time it was terrible news that I didn’t want to hear.

How has your diagnosis changed you?

After I was tested I starting fundraising for the Huntington’s Disease Association. Running was completely new to me, but since June 2008 I’ve run four marathons and have two more to do. Doctors can’t predict when the disease will start to affect me, but it usually occurs earlier in the next generation if it’s passed down the male line – so I’ve probably got 10–15 good years left. With Huntington’s you either sit back and let it defeat you, or you stand up and fight back a bit. It took me a few months to get back on my feet, but once I did I realised that I can take a lot of strength from it.

For Matt’s marathon progress, visit his JustGiving page.

Sadly, Matt’s dad died three weeks after this interview. Matt and his family wanted this article to be published.

About this resource

This resource was first published in ‘Genes, Genomes and Health’ in January 2010 and reviewed and updated in December 2014.

Genetics and genomics, Health, infection and disease, Medicine
Genes, Genomes and Health
Education levels:
16–19, Continuing professional development