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This website is intended for carers and patients living with haemophilia.
19 year old Matthew tells his story
What is your experience of haemophilia?
I have haemophilia A. When I was younger I used to get bleeds in my joints and when this happened I used to have to go to hospital for an injection. However, as I got older I was taught to treat myself and then I went onto prophylaxis. Since I have been on prophylaxis I have had far fewer bleeds and I do not have any joint damage. Also, if I do get a bleed now I usually recover within an hour of receiving treatment.
What is your first memory of haemophilia?
My first memory of haemophilia was on my 3rd birthday when I was supposed to be having a party. My arm hurt a lot and I had to be taken to hospital for treatment. After my treatment I came back home and luckily by the time I got back I was better which meant that I could still have my party.
How did it affect the way you grew-up?
Haemophilia has affected the type of sport I was able to play growing up, but my school has always been very helpful and provided alternative activities. However, I have found that it actually didn't affect my life too much, and I am able to live my life to the full.
These days I really enjoy going to indie music concerts and I travel abroad with my family and go on school trips. There are so many activities that I can still do with my friends that I don't feel left out. I have also been on several of the Haemophilia Society weekends which were good fun.
Is your treatment easy to manage?
My treatment is easy to manage especially as I am now on home treatment. I can give myself an injection in about 30 minutes, including the time that it takes to warm up the bottles, so really it is something I can do while watching TV.
What has been the greatest challenge of living with haemophilia?
For me, one of the more difficult things growing up, is that I have an interest in rugby but I have never been allowed to play it.
What has been your proudest moment or most rewarding experience?
It was actually the first time I was able to inject myself. It has given me so much more freedom and I have been able to become totally independent.
What are your hopes for the future of haemophilia care?
At the moment I think that the situation in the UK isn't bad. However, last year I went to the WFH Conference in Vancouver, and it made me feel that I am very lucky compared to others with haemophilia in different countries where treatment is not so readily available. So, my hope for the future would be that the situation improves in these countries. On a personal level I also look forward to the day when longer-lasting factor becomes available.