Furthermore there are some tough choices to make: what kind of sports can and will I engage in, without taking too many risks? which profession can I practise, and do I want to? can I really engage in this activity? is it smart to travel to a country without a proper blood supply? should I do this? is it smart to tell others about this now? All these are questions I think about and have to deal with on a daily basis. My illness is always there, and will never leave me alone.
With this project I hope to bring to attention what living with a (not always visible) disease, the treatment for which is hardly or not available, means. I hope there will be research into all blood clotting disorders (including mine, of course), and that it will lead to a safe treatment for blood clotting disorders without the use of biological remedies (like blood platelets in my case). I would also like to show there’s still much to be done worldwide. Healthcare in the Netherlands is quite good, but experiences abroad tell a different story. I hope patients in other parts of the world will get better care too.
I would like to introduce myself. My name is Minette van der Ven, 32 years old, and I live in Rosmalen, the Netherlands. I was born with Glanzmann’s disease (a rare hereditary blood clotting disorder affecting about 2.100 patients worldwide), which my parents found out during the second year of my life, when the diagnosis was made. Playing in the pen and crawling led to inexplicable red pinpoint bleeds and large bruises. Furthermore, I’ve had my fair share of trouble when I was teething. Many days my teeth had funny colours, I had a bad taste in my mouth, and I’d rather not talk about the strange faces people made.
From the moment we knew what I had, Glanzmann’s has impacted the person I became. Luckily, I can say with pride it helped build my character, especially an enormous amount of perseverance. On the other hand, I’ve had many unpleasant experiences. For example… On my first school day, I thought it might be a lot of fun to climb onto a piece of playground equipment. Unfortunately, I thought it would be just as much fun to test the playgrounds mats to their limits. So my first school day turned out to be quite a drama. At a certain age I also wanted to explore the world on my bike. As you might have guessed, this went fine with side wheels, but without I hit the ground again and again, with all the associated consequences. But that didn’t stop me (fortunately neither did my parents) from further exploring the world, but eventually I learned to know my limits.
I also had some critical moments. My first period springs to mind, when I just couldn’t do anything anymore, and you could sense everybody was overwhelmed with fear. The amount of blood I lost meant my Hb (haemoglobin) was very low, and I wasn’t capable to do anything whatsoever. It took several blood platelet transfusions and my own fighting spirit to keep going. I still have to deal with long and heavy menstruations, but that’s all part of my life now. I know how to accommodate for certain problems, and what activities to avoid on moments like that.