Matt, 21, has been a Youth Ambassador for the Haemophilia Society for two years. Growing up with severe Haemophilia A, he now talks to parents of newly diagnosed children about his experiences and mentors young haemophiliacs who attend the society’s regular youth camps.
He said: “As I was growing up, there were testing times, but my family got me to understand that I had to take ownership of the situation. Accepting my condition and learning to deal with it was the way I was brought up. Haemophilia can impact on everything, but you must try not to let it restrict you and work around it. My parents encouraged me to be active and whilst growing up they let me do swimming, football and tennis. I think that’s why my joints are in good condition now, because I kept fit.”
Matt, who is studying Product Design at the University of Huddersfield, has played football since primary school and has travelled independently around America and Australia. He believes that coming to terms with his haemophilia and working around its limitations is the key to living a full life.
“It is hard sometimes, especially when you see your friends doing whatever they want. I was never wrapped up in cotton wool and I think it’s important to have the freedom to develop socially and not to be separated from your peers. Always look for the things you can do, take the opportunities that are offered to you. Without haemophilia, I wouldn’t have done as much as I have, because it’s given me unexpected opportunities.”
When Matt was 16 he was persuaded by his mum to go on a youth camp run by the Haemophilia Society. The camps allow young haemophiliacs to meet, gain some independence and try new activities, mainly outdoors. They also give parents a break. To his surprise, he had a great time and formed new friendships. This led to further involvement with the Haemophilia Society and resulted in an invitation to become a Youth Ambassador two years ago.
Now Matt attends the Newly Diagnosed Weekends to reassure parents that their sons can look forward to a full and active life.
He said: “For me, accepting the condition, acknowledging it, moving forward and getting the most out of life is how I deal with it. I know my limitations and then I work out a plan. For example, playing football, we risk assessed the sport, ensuring I had the correct equipment, had done appropriate training and planned my treatment accordingly. At the Newly Diagnosed Weekends, I have the chance to reassure parents that their child can turn out even better than me! I find it rewarding and hopefully hearing that you can have an active, ‘normal’ life is helpful to new parents.”
When Matt finished his Sixth Form College studies he went to Australia to work and travel. Then, at the end of his first year of University he worked for Camp America for three months. He said: “I had to tell them about my haemophilia, of course, and we devised a plan. The main issue was taking this large supply of drugs over to the States which had to be kept cool. Thankfully there were no haemophilia related problems – although I did have some nasty hangovers!”
Since becoming a Youth Ambassador for the Haemophilia Society, Matt has also attended two European Haemophilia Consortium conferences and a leadership conference in Brussels. He said: “I never expected to have these opportunities. By saying yes to being a Youth Ambassador has opened up new experiences, which I have really benefitted from.”
Matt and his family have been involved with the Haemophilia Society since his parents attended a support group in East Yorkshire when he was first diagnosed. He said: “The group gave my parents so much in terms of peer support and reassurance – it made a massive difference. When everything is going OK, you don’t need as much support, but the Haemophilia Society has always been in the background of our lives.
“Now that I’m a Youth Ambassador I feel very fortunate to be a part of what the Haemophilia Society does. They offer so much to families and, through them, I’m pleased to be able to make a difference too.”