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This website is intended for carers and patients living with haemophilia.
A university student tells his story
What is your experience of haemophilia?
I have severe haemophilia A, but I am extremely lucky that my haemophilia is relatively straightforward and that I have not been affected by inhibitors, HIV or hepatitis. I do, however, have haemophilic arthritis in both my ankles, which is because they became target joints when I was young and I was a difficult teenager, who refused to have regular prophylaxis.
What is your first memory of haemophilia?
I can't remember a time I was unaware of it, it is just something I have always had. Probably my first memory of haemophilia related life is when I was 3 or 4 and I was sat in my consultants big leather chair pretending to be the doctor.
How did haemophilia affect the way you grew up?
That's hard to say because I don't know a life without haemophilia. I find that my friends and family make my life easy to live. It rarely bothered me at school because I'm not the most sporty of people and I had a very supportive group of friends who understood that I occasionally needed to be on crutches, or that I would not be able to do gym.
Is your treatment easy to manage?
Yes, I've always found it easy to manage. I couldn't wait to self-treat and so I took responsibility for my treatment at a very early age. Luckily I have not had inhibitors, and the excellent doctors and nurses at the Newcastle Haemophilia Centre have helped me to find ways to balance my social life and my treatment.
What has been the greatest challenge of living with haemophilia?
The biggest challenge for me living with haemophilia was the onset of arthritis in my ankles. It has not yet affected my every day life but I know that one day it will start to prevent me from doing the things that I like. However, I don't dwell on this much because I don't want to waste time now worrying about being less mobile in the future. I just enjoy every day as it comes and I am very thankful that the arthritis is my biggest worry.
What has been your proudest moment or most rewarding experience?
The volunteer work I do with the UK Haemophilia Society has been my most rewarding experience. I work at the activity weekends and I have accompanied the society to two World Haemophilia Congresses. These were eye-opening and I am very proud to have been asked to attend.
What are your hopes for the future of haemophilia care?
My biggest hope it that one day a cure is found and I know there is lots of work underway at the moment into gene therapy. Although a cure would be odd because I consider my haemophilia to be part of who I am and it would be strange to lose it. Other than that, I hope they discover new means of treating arthritis and speed up treatment methods. However, I must say, I will be a very happy guy if haemophilia care stays constant from now until I die!