“Défi d’Elles”: the moving testimony of Lorène, suffering from Charcot’s disease

Défi d'Elles the moving testimony of Lorène, suffering from Charcot's disease

Lorène Vivier was 35 years old when she was diagnosed with Charcot disease. Faced with this tragedy, she made it her mission to raise awareness of this incurable disease and raise funds for research. Intrepid and courageous, she recently participated in the “Défi d’Elles” sporting raid in Lapland, another way to raise awareness about her illness.

On November 9, 2022, Lorène Vivier's life changed. That day, the 35-year-old discovered that she had Charcot's disease. An incurable and degenerative disease which causes progressive paralysis of the muscles, with a life expectancy of three to five years following diagnosis. 

“I had difficulty realizing it,” Lorène tells us. “I told myself that I was going to have physiotherapy sessions and that things would get better, and in fact no,” continues the young woman. A tragic diagnosis which she decided to make a strength and a driving force. “I believe it was my mission on earth to make this disease known,” she explains to us. “I didn’t see any other solutions, so I left the burning house to raise awareness about this disease and to shout about the urgency of finding a treatment.” 

So when a young woman had the opportunity to participate in the sporting raid in Lapland organized by the Défi d'Elles association, she didn't think twice. This competition, which has supported the fight against breast cancer since its creation, has chosen to highlight another cause for this edition: the fight against Charcot disease. 

In tandem with the host Pascal Bataille, whom she has known for many years and who is a great support in her fight, the young woman embarked on the adventure, despite significant physical challenges. Indeed, this competition which took place from January 24 to 28 combines running, cross-country skiing and cycling in extreme conditions. A hell of a challenge for Lorène who only has one movable arm, the other being paralyzed by illness. 

She describes a “very emotional” adventure during which she surpassed herself. “It was rich and completely crazy,” she continues. The cross-country skiing event was particularly difficult. “I was paralyzed with fear,” Lorène explains to us. Despite the difficulty and a few tears, she recalls a profoundly human moment during which her partner lent her a hand. In addition to Pascal Bataille, Lorène's team was made up of four people: her sister Marine and her partner Ludovic, her friends Pauline and Julien and her cousin Jean-Hubert. During this particularly difficult ordeal, they all took turns to lend him a helping hand.

“We arrived last, hand in hand and very proud of ourselves with Pascal. I had tears in my eyes, it was a very moving moment,” she explains. 

This great adventure is now behind her, but for Lorène the fight continues, to make her illness known and to try to find a suitable treatment. You can follow these adventures on his account Instagram

Camille Westphal Perrier

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