What advice would you give to children with haemophilia?
My advice to children: First of all, I think that a haemophiliac child must never be ashamed of his illness. Our particularity must be our strength. Although haemophilia brings us many problems, it enriches us as well by making us more mature and more open-minded. Our experience of haemophilia makes us able to talk about it with others. Of course, we don’t confide in just anyone, but putting our difference into words and sharing it helps, undeniably. Then, we have to learn as early as possible to identify dangers and recognise bleeding, to know the danger zones and react accordingly. We mustn’t be afraid of being scolded, or feel guilty because we feel we may have been careless. We’ve got to be able to react at the first signs, which will help us to maintain our physical well-being. Being able to inject ourselves is the first step towards being independent, so as soon as you can, don’t be afraid to take that first step. Finally, it’s obvious that we can’t play all sports. Nevertheless, we’ve got to be able to try playground games in particular, even if it’s only to avoid being left out, or feeling that we are. And if we’re unlucky enough to be limited to being a referee, we can still play with our classmates in other activities.
What advice would you give to parents with children with haemophilia?
First, don’t feel guilty because your child was born with haemophilia! You gave him life, the most precious of gifts. That must always be a joy for you and your partner. Next, create a network. Get a clearer vision of your future by exchanging ideas with other parents of haemophiliacs through associations in which you can do so. Then, learn as much as you can about haemophilia and teach your child the ins and outs of his disease. There are books and videos which are designed for very young children. And finally, don’t cocoon him any more than necessary. Explain to him that he’s got to pay attention and that, as soon as he feels pain, he must let you know. And last but not least, give him his injections.
What do you remember about growing up with haemophilia?
When I was a child, I had a disturbing tendency to get hit on my forehead. For my mum, the solution was to have me wear a nice but really unfashionable headband. I didn’t like it - I didn’t even find it funny! Today, I can’t help laughing when I look at old photos of myself wearing it!
Since he was seven or eight, my son knows when he needs or doesn’t need treatment; he’s able to tell me: ‘Here, it’s okay, just putting some ice on it will do’, or ‘Here, I need treatment’. Sometimes you’ve got to have confidence in your child so that he can recognise the different kinds of pain and learn to distinguish between the seriousness of the incident based on the pain.