Your 20s
& Beyond
Real Lives
Dan Jolley
A budding young doctor, Dan tells his story
What is your experience of haemophilia?
I'm a 21 year old with severe haemophilia and I have an inclination towards the adventurous and occasionally the ridiculous. I'm currently studying at Southampton University medical school and looking to become a doctor in 2009. Maybe I shouldn't have put those two sentences together. I think I would categorise my experience of haemophilia as long, multi-faceted and occasionally arduous.
What is your first memory of haemophilia?
I can remember the room in Margate hospital where I used to have injections. Specifically, I remember when it took 5 members of staff to hold me down, bearing in mind I was quite small. I've never been sure why, but for some reason I had a fascination with the machine that rolled the bottles of factor to mix them.
My first bleed, that I can remember, was a huge bruise on my forehead, or as we lovingly described it, "the unicorn incident" I seem to recall that I was tearing round the house until an unfortunately placed coffee table brutally jumped in the way of my head.
How did it affect the way you grew-up?
Haemophilia has had a massive influence. Practically it meant we went to hospital all the time. It has meant having to be aware of bleeds, a huge number of injections, pain and the frustration of missing out on sports as well as time off school. My mum gave up being a radiographer and became a playgroup leader in order to be around to care for me. The family dynamic changed, I got more attention and my brother got less, although my parents tried to even things out, it's only natural that they spent more time doing activities around me.
However my parents always said that they would never wrap me in cotton wool so I did as much as I could whilst still acknowledging some limitations. I still managed to play tennis to county standards, I played for my school football team and I did most of the things my friends did. Haemophilia was the obstacle that helped instil an “overcoming” attitude in me, spurring me on to do the same if not more than my friends around me. It also gave me a determination that now helps me in every aspect of life. Family-wise my brother now also wants to know how to inject me so when we are travelling together he can help with any bleeds.
Is your treatment easy to manage?
Yes.
What has been the greatest challenge of living with haemophilia?
Having to stop playing football in order to protect my joints, so I can become a doctor. The worst bit is knowing that I can do it but I shouldn't, whilst seeing all my friends getting stuck in. But I do know that it will be worth it in the long run.
What has been your proudest moment or most rewarding experience?
I presume that becoming a doctor will feature pretty highly on my proudest moments list. Otherwise meeting haemophiliacs in Taiwan and sharing experiences or working in a slum in Nairobi with AIDs orphans, teaching them about football and sharing my Christianity with them.
What are your hopes for the future of haemophilia care?
Chocolate bars with every box of factor VIII. On a more serious note, my hope is that the 80% of those with haemophilia in the world who don't receive any treatment can begin to get some, as this will hopefully reduce the incredible pain and suffering that they go through.
