YOUR LIFE EXPERIENCES
Gaëtan, 31, has a severe form of hemophilia. This disease "causes degeneration at the joint level". "I'm 31 years old and when I play a radio, my ankles correspond to those of a person who is over 85 years old," he tells Olivier Delacroix about Europe 1. He explains that the practice of Physical activity is something "all the more important" in the case of a disease like his to "try to slow things down".
"Hemophilia is a bleeding disorder, that is, when blood is bleeding from a vessel, it requires a system called coagulation to allow the vessel to In the case of hemophiliacs or other rare haemorrhagic diseases, it is difficult to close this vessel and blood is diffused.A hemophiliac is not someone who can die by cutting and emptying his blood because we have some extremely effective medications today The big peculiarity of this disease is that it causes joint degeneration because of the bleeding that takes place in the joints. years old and when I'm on a radio, my ankles match those of a person over 85 years old.
"When I was little, I was told that you should avoid physical activity as much as possible"
When I was little, I was told that you should avoid physical activity as much as possible. For many people, and even professionals until a few years ago, hemophilia was a disease that needed to be taken care of. It is the fragile child, it is the child who must not be put in contact with others. When I was little I was not allowed to play sports and today, we say the opposite. It is said that in order to better protect one's joints, one must play sports because the medications that one receives allow us to have a life that is about the same as normal and without physical activity, without sport, still deteriorates our joints.
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The challenge of playing sports is phenomenal. To make it very simple, I have difficulties and I am no longer allowed to run or jump, when I'm just 30 years old. The degeneration of the joints makes that there are big pains that are difficult to manage daily and on which you have to do a lot of physio, throughout his life. It is also necessary to have a physical activity and a hygiene of life which is quite restrictive. I pay attention to what I do and I never do too much. I can practice almost any sport, but be careful what I can do.
When I was a kid, [I used to play basketball], I was told 'stay on the bench' or 'do the referee'. It was not something that was very easy going and as soon as I had the chance, as soon as my parents had their back turned, I would take my basketball and go out with my friends. We played basketball a little everywhere, and that's what allowed me to spend my time as a kid and when I was a teenager. Today, we must adapt. The wheelchair basket for example, it is one of the versions that could be interesting for me.
The main obstacle, it is not the risks that I run, it is the eyes of others. These are the others because they do not want to pass you when you play football, it is the others who do not want to go to you. Everyone knows, when you arrive somewhere, that there is a label stuck on your forehead and suddenly, everyone pays more or less attention. It's very difficult to try to fit in and try to be like the others when it's like that. I think the idea is to say that we can do a little bit of everything and it is the people who know how to adapt because they have an education. I was born with this disease and I will have it throughout my life and I know how to do things, I know how to adapt according to things.
Playing sports is "all the more important when you have a chronic illness"
I was very lucky when I was little because my parents were very active in an association called 'The French Association of Hemophiliacs'. There were other people with the same rare disease who taught me a lot about what to do and what not to do. It's even a must to do physical activity and play sports because it's good for everyone, but it's even more important when you have a chronic disease. We can try to slow things down.
The degenerations in the articular level, they are inevitable but we can slow them down as much as possible. Joint disorders occur in anyone around 50 or 60 years old. If we can wait 50 or 60 years for a person with hemophilia, I think that we will have reached something that is on the order of normal. I had joint problems when I was 15 or 16 years old and I am a little bit in trouble today, even if I try to adapt to the best. "
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