A strong outbreak that appeared on a Sunday morning changed the life of Arnaud Gautelier. In 1999, this artistic director, then aged 22, learned that he had to live with multiple sclerosis. More than two decades later, the former Parisian tells us about his journey and the creation of his association “Notre Sclérose”.
- Arnaud Gautelier was diagnosed with multiple sclerosis in 1999, three months after his first attack at age 22.
- “I said to myself, ‘that’s cool, give me medicine so I can return to my job that I love.’ But I wasn’t in denial either, I was living my life as a young Parisian despite this disease which is not easy on a daily basis and which tires me out a lot. In addition, since my first attack, I can no longer run or walk for very long.”
- Father of a little girl, he ended up leaving his job as artistic director and launched into the creation of the Notre Sclérose association in 2007, in order to provide a source of information for young patients: “we don’t just talk of the disease, we show how to live with it”.
“At the time I was 22 years old and working as an assistant artistic director in Paris”, recalls Arnaud when we discuss the onset of his multiple sclerosis. The young man spends his time working long days that his status requires, from 9 a.m. to 8 p.m., and keeps a little free time to party, like any young person his age. “I got up one Sunday morning and realized that I had balance problems, it was like I was drunk, and strangely, the day before, I hadn’t gone out because I felt tired… I also had a little tingling in my face and in my hand, so I immediately felt that there was a problem.”
Since my first flare-up, I can no longer run.
Accompanied by his parents, Arnaud goes to the Pitié Salpêtrière emergency room. “I stayed there for three weeks without getting a response. I only received the diagnosis of multiple sclerosis three months later during a second MRI, because at the time it took a little longer to establish it than today.”
More relieved to put a word on his illness than worried by what it represents, Arnaud above all wishes to resume his life as if nothing had happened. “I said to myself, ‘that’s cool, give me medicine so I can return to my job that I love’. But I wasn’t in denial either, I was living my life as a young Parisian despite this illness which is not easy on a daily basis and which tires me out a lot. In addition, since my first flare-up, I can no longer run or walk for very long. I also had several other flare-ups which each time led me to the hospital to take cortisone… But at least I was able to return to work!” Arnaud then worked in advertising agencies for the 10 years following his diagnosis. “I succeeded in my missions, I earned a good living. But one day there was a plan to restructure and merge advertising agencies. They were asking for volunteers to go and I raised my hand.”
Our Sclerosis: “We don’t just talk about the disease, we show how to live with it”
With his partner Sandy, Arnaud leaves the hectic life of the capital, with sidewalks inaccessible to strollers and wheelchairs, for a more refreshing life in Nantes. There they raise their daughter: “I was able to take advantage of it 100%, I was able to have an incredible role as a dad, invaluable I think thanks to this time saved.” At the same time, the father set up the Notre Sclérose association in 2007. “I used what I knew how to do in an advertising agency, but for the general interest, and for a cause that was obviously very close to me. Today, on our website nossclerose.org, we have 50,000 unique visitors per month and 820 testimonials. It is a huge database and also a source of information for young patients. We don’t just talk about the disease, we show how to live with it. This is important because when I learned about my multiple sclerosis, I found very medical information, but very little on the daily life of patients. And for two years, we have been giving all donations from individuals to Inserm in Nantes, which is a team specializing in multiple sclerosis and which does exceptional work!”
You have to have the ability to adapt. Adapt to your new body, adapt to the problems.
Building on this success, Arnaud also created the application “My life with multiple sclerosis”, with the help of his developer neighbor who has a wife also affected by multiple sclerosis, and in collaboration with many patients and health professionals from the Nantes University Hospital. “It’s a huge database and a source of information for young patients, to show them how to live with the disease.” Accessible for free, the application recently exceeded 10,000 downloads.
His advice to new patients? “You have to have the ability to adapt. Adapt to your new body, adapt to the problems. Obviously it’s delicate, and it’s not easy every day because you also have to adapt to having less money, less social life… And 80% of the symptoms are fatigue. But for all that, we must continue to do the things we like to do, even if we do them differently, we must do them!”
Arnaud Gautelier also wrote a testimonial book in 2006: J’te plaque ma sclerosis, published by Philippe Rey; and a graphic novel in 2012: Ants in the legs, published by Emmanuel Proust.