"Blood on the road"
I’m Chris van den Brink, 55 years old, married to Manon and we have 2 children.
I have haemophilia A, in the most serious form. From childhood on haemophilia has dominated my life. I had to visit the hospital many times, and had to be admitted when I had a really serious bleed. I also had to celebrate many birthdays and holidays in the hospital. In the past the only treatment was administering fresh blood, later I got plasma. This would stop a bleed, and I could move on, until the next bleed. Later it turned out that all those bleeds had damaged my joints, and walking became harder, because of the pain caused by arthrosis in my joints. In 2007 my right ankle was replaced with a prosthesis. The pain is gone, and walking is easier now. There’s still a long way to go, because there are other joints that need to be replaced.
The treatment is getting better al the time, and now we have products that can be made in a factory. These coagulation factors in concentrated form I can administer myself. All this has improved my life and that of my family dramatically. Now, having a job and going on vacation is not a problem at all.
Although, going on vacation can still lead to problems. Picture this: you have syringes, needles and little bottles with white powder on you, and … you’re Dutch. Try to explain that to a customs officer who hardly speaks any English.
In such cases it helps to be creative, and, in time, you’ll get the hang of it. Through experience you learn to deal with your disease, and through the years you learn what is possible and what’s not.
A few months ago I was asked to become team captain of the group that will cycle to Stavanger, Norway. I didn’t take me long to consider. Putting up a performance like this by a group of wonderful people, and being part of that, is the best way to show it’s possible to lead a fulfilling life with a blood clotting disorder, in a society like ours.