Marc, Canada
- Haemophilia A
I had been diagnosed with haemophilia today, when treatment is effective and safe...
In is own words
If you are handed lemons, you may as well make lemonade,’ says my dad. Which is why my school science projects were always about haemophilia! As a kid I missed a lot of school. The other kids were jealous, but they didn’t realise the pain I was in – it’s no good being at home if you are too ill to do anything fun! I didn’t just miss out on my education; I missed out on making friends. Then, when I was in school, I would have a splint or a bruise and so I constantly had to explain what had happened, which gets so tiring. I’d also miss out on parties because I felt self-conscious going with a limp or black eye.
When I was younger, haemophilia drugs were made from blood products, which weren’t screened, so I now have HIV and hepatitis C. I also have arthritis, a permanent limp and my arms won’t straighten. When my grandma and me get together at family functions we can predict if it will rain from the ache in our joints!
I’m lucky because I’ve got a really supportive family and a great network of friends. If I had a bad day when I lived alone, my friend would ‘lend’ me his wife who would come over and help me around the house. Now I’m in a good relationship, and my girlfriend lives with me, she takes care of me on those bad days. On top of the normal relationship issues she has my haemophilia to deal with – she’s a very special woman! She knows that when I say I need to go to the hospital, we have to leave immediately – even if she’s not done her hair! Some days are harder than others – bringing the laundry downstairs may be OK one day, but a big ordeal the next. This makes me mad, as everyone should be able to do these simple tasks.
But I look at teenagers today and think ‘wow!’, we’ve come so far in the last 10 years. Nowadays having haemophilia isn’t such a big deal, it doesn’t have to impede your life – anything is possible, especially with the treatments now available. I’m a regional service co-ordinator with the haemophilia society and I work with kids under 18 years old, giving them and their parents help and support. The parents and children need someone they can talk to. Small things, like choosing a babysitter, can be an issue if your child has haemophilia.
As part of my job I take groups on camping and canoeing trips and we share ‘war’ stories. I help them realise what they can accomplish, even while living with haemophilia. When I was growing up my parents let me try anything I wanted, hoping that I would make the right decisions and not do anything too dangerous. But when you are hanging out with your buddies you are susceptible to peer pressure and so I did get up to some things that, in hindsight, weren’t such a good idea – for example trying to do tricks on my bike – and I’ve got the scars to prove it! By the time the kids with haemophilia are teenagers they are often wise beyond their years. Each kid thinks they are the only person in the world with haemophilia, which is why its important for them to meet other people like them.
But teenagers today don’t have so much to worry about, as most can have prophylactic treatment. They can lead full, vibrant lives with just a few more injections than most people! They don’t have arthritis and painful joints, and they don’t have to worry about getting HIV from their medicine. Which is why I wish the technology existed when I was diagnosed 27 years ago, that has allowed the development of the highly effective and safe haemophilia treatments of today.
