“I took a few days to think it over because I was going to be very exposed, but I was really very happy to be able to do it. “
The face of Marine Rousseau, 20-year-old Chartraine, will indeed embody the 2020 Telethon campaign. In 4×3 posters in the cities of France, on the association’s website and during the live broadcast on television channels on December 4 and 5. A mission that the young woman takes very seriously.
A girdle myopathy diagnosed three years ago
Marine suffers from a belt myopathy diagnosed three years ago. “The sugar, the nutrients don’t attach themselves to my muscles,” she simply sums up. “This causes fatigue, severe muscle pain in the arms and legs. “
I know that if I do too much, my legs won’t be able to carry me anymore. I just want to have normal 20 year old plans without thinking about all of that.
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The diagnosis was made after a long obstacle course.
“I started to feel bad in college, I was very tired. I was given food supplements, ”she says. But the pain and fatigue persist.
The Telethon is available in light mode
More in-depth analyzes are carried out and Marine is referred to various specialists, including a geneticist. The verdict fell in 2017: R9 girdle muscular dystrophy linked to FKRP. A slightly technical name for a reality: his daily life and his life are turned upside down.
“I can no longer play sports, I have to reduce the time I spend on my bike rides and, above all, live according to my state of fatigue. I know, for example, that if I’m already a little tired, I won’t be able to go shopping because I risk dropping my bag. You have to anticipate, all the time. I know that if I do too much, my legs won’t be able to carry me anymore. I just want to have normal 20 year old plans without thinking about all of that. “
At the announcement of the diagnosis, however, Marine feels almost relieved.
“I told myself that there was really something and that they would finally be able to take care of me. But behind, the backlash does not take long. “I was told that, for the moment, there was not much to do except physiotherapy sessions and rest. So there was a complicated phase. And I don’t like to depend on others, to be restricted. “
I told myself that there was really something and that we would finally be able to take care of me
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The young woman was also able to learn about the evolution of the disease: “It can be more or less rapid. Mine evolves rather slowly. But some may find themselves in a wheelchair, have heart or respiratory problems. I have appointments every six months to check that there is no progress on that side. “
The generous Euréliens: € 479,000 collected for the Telethon
However, she had to give up certain things, such as working in medical research. “I had tremors in my hands, in class. It was therefore incompatible with my illness. If we start to drop things in the laboratory, it becomes complicated… ”
She then turned to a BTS tourism, and does not regret it: “It interests me a lot, I was able to do my work-study program at the Chartres tourist office”.
Today in Strasbourg to follow her companion, far from her family, she is looking for work. “It was not easy for my parents, who were worried. I know that I will also have to talk to recruiters about this, because I cannot, for example, carry heavy things and my travel time should not be too long. “
The Telethon is being prepared as a remedy against gloom in Châteaudun
The hope of gene therapy
For several months, a new hope has animated the young woman. A gene therapy trial is under preparation for girdle muscular dystrophy linked to the FKRP gene. Marine hopes to be able to benefit from it.
Followed at the Institute of Myology, she spent two days, in February 2020, at the Salpêtrière for a first part of the protocol of the FKRP natural history study. A start of the trial could take place in the fall of 2021.
“If it works, it could stabilize my disease. I would also like to make people understand that we should not judge at first glance, because there are handicaps more or less visible… We must always try to understand. ”
Estelle Rosset
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