VIDEO. Marine, 20, is the face of the 2020 Telethon

Through Laurent REBOURS
Published on 21 Nov 20 at 19:08

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For this edition of Telethon, the December 4 and 5, 2020, the face that will appear everywhere in France as an ambassador for this event will be that of Marine Rousseau, a 20 year old young woman from Chartres (Eure-et-Loir).

Suffering from girdle myopathy that she was diagnosed three years ago, Marine shows an iron will even if her therapeutic protocol is often an obstacle course.

Navy, symbol of this battle

The 2020 edition of the Telethon was unveiled this Thursday, November 19, 2020 by videoconference launched by the president of the AFM-Telethon, Laurence Tiennot-Herment. The opportunity to present the one who, on all the posters of France, fists forward, will be the ambassador of this new edition marking the thirtieth anniversary of the Genethon.

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Marine Rousseau is just 20 years old. Originally from Chartres, she now lives with her companion in Strasbourg (Bas-Rhin). A first challenge, because he had to settle far from his extremely close and united family who, for years, has been fighting alongside him to keep this precious autonomy to which she clings with exceptional energy.

Pushing doors to understand the disease

It was not until 2017 that Marine could put a name on this disease who has been with him since he was 13 and which “caused great fatigue, discomfort especially during sports lessons,” she explains.

The girdle myopathy, that’s his name. A muscular dystrophy belts, a rare disease of genetic origin, which manifests itself by a progressive decrease in the strength of the muscles of the pelvis (pelvic girdle) and shoulder muscles (shoulder girdle).

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Marine tells how her mother had to push doors, insist, organize meetings for two years with several specialists so that in 2015, three years after the onset of the first symptoms, they could be referred to the Trousseau hospital.

She begins a year of testing until she is diagnosed. Her form of myopathy affects her arms and legs. His daily life is made of uncertainties.

I can be perfectly fine, or appear to be. And then it is a fatigue that falls and, in the phases of fatigue, getting out of bed, pulling a blanket become hardships.

The Telethon adventure

It was only natural that Marine found herself immersed in the Telethon adventure with the presentation of her ” natural History“, A term that describes the phase that exists just before entering a clinical trial protocol.

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She allows to understand the evolution of the disease, its origins.

I have appointments every six months, it was in February, in August and there soon, at La Salpêtrière in Paris in the myology department so that they recover as much data as possible before, in principle, the tests. next year.

The young 2020 ambassador wants to deliver a message to all patients awaiting treatment. “There are certainly some very good victories against the disease that must be welcomed, but we must not lose sight of the fact that researchers still have a great deal need support« .

Project into the future

If Marine’s enthusiasm is sometimes put to the test when the disease gets the better of her physical strength, she always has a fighting spirit and does not fail to project itself in the years to come.

“Three years ago, walking, cycling, going to the swimming pool were all done very well, today it’s much more complicated but I just had my BTS Tourism and I obviously hope to exercise ”notes the young woman.

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