Paris (France), Haemofilia A
Like many other haemophiliacs in France, 31-year-old Timothée Weill was, for a long time, scared of being affected by HIV. Now haemophilia is only a marginal part of his life while his focus is on his newly born daughter.
”I wanted to show how easily he could go to the pharmacy on a Saturday, collect his medicine, go home, take a shot and that was it,” says Goran Kapetanovic when asked to describe the introduction to his film about the 31-year-old Parisian Timothée Weill.
”It shows another depiction of the condition, but one that should be the standard everywhere.”
The salesman Timothée Weill leads an active life in the heart of Paris’ pulsating city centre. He recently graduated university, got married and had his first baby, while haemophilia lingers somewhere in the periphery.
“It felt important to show the normality of a life with haemophilia. There are such extraordinary contrasts between European countries; something that is normal in one country is a privilege in another. But I wanted to show how easy life could be,” says Goran Kapetanovic. Still, he says, it’s apparent that haemophilia did have a strong impact on Timothée Weill.
“He did reflect a lot about what it meant to suffer from an invisible condition: how it would affect his newly born child, what impact it would have in his old age. He was extremely conscious about how lucky he was to be living in France, and the importance of making treatment accessible for the rest of the world.”
Not letting fear get in the way of life
Despite Timothée Weill’s rather unproblematic experience, France hasn’t always been a leading country in terms of haemophilia treatment. Just like all around Europe the risk of being infected with blood-borne diseases was high. In the 1980’s there was an especially high risk of being infected by HIV, something that Timothée Weill feared for a long time.
“A big part of haemophilia is the psychological aspect where you have to come to terms with suffering from a permanent medical condition. I felt that Timothée was able to put everything in perspective, to realize the importance of having a wife and family that support him.”
Goran Kapetanovic is the same age as Timothée Weill, and shares the experience of being a father to small children. This fact helped Goran Kapetanovic to relate to Timothée’s situation, and made it easier for the two to connect.
“When you arrive with cameras and full equipment it can be a bit intimidating for the person you are about to interview, especially if you’re meeting them for the first time and don’t have too much time. It then becomes important to share from your own experiences, and to be able to relate to his,” says Goran Kapetanovic.
Timothées Weill’s newborn daughter is a carrier of the recessive gene that causes haemophilia, which, since she is a girl, means that she is completely healthy. Still the couple never worried about passing on the gene to their child since they don’t see the condition as a limitation.
“Timothée doesn’t let haemophilia win. He knows that with access to treatment you can live a normal life,” says Goran Kapetanovic, who also sees benefits that come from living with haemophilia.
“All haemophiliacs that I have met, no matter their age, have a lot more life experience and are stronger individuals thanks to this condition. They all want to explain, fight prejudices and influence people in power to make a change.”