“I made sure that it could fit into my life,” says Mathilde

Mathilde is a young woman comfortable in her sneakers, who adapts to the tics – mainly verbal – punctuating her daily life. “I make noises”, says this young woman with Gilles de la Tourette syndrome. Almost every sentence is punctuated by “Oh!”. She also has gestural tics: “I stare at a point in the sky with my hands. My girlfriends told me that I turned off the light with my pinched fingers”, smiles this woman of about thirty years. She describes her everyday life in a podcast, “Gilles, my sister and me”, written by her sister Camille Descroix and listenable on Arte Radio since February 10, 2022.

✍️ My podcast “Gilles, my sister and I” comes out Friday 11/02 on @ARTE_Radio and streaming platforms.

A co-production @ARTE_Radio and TavieProd (@ZazieTavitian), with the support of the Association Française du Syndrome de Gilles de la Tourette (@FranceTourette) pic.twitter.com/1nLZ4fYNSb

— Camille Descroix (@CamilleDescroix) February 2, 2022

Like Mozart, André Malraux, Vincent Lindon or Billie Eilish, she suffers from this rare neurological disease, which affects one in 200 children. “I made sure that it could fit into my life without it bothering me”, she explains. Indeed, not all patients who suffer from it feel sufficient discomfort to consult a doctor. Some have learned to live with these muscle contractions that generate noises and tics. Mathilde, for example, works “in a super friendly and warm estaminet”. She immediately flourished in catering: “It brings together a lot of different people. It smells of fries and maroilles cheese.”

I attract a lot of people who feel like they see me as someone special who, despite their disability, smiles and is happy. So people feel like they have a connection with me.”

Mathilde, suffering from Gilles de la Tourette syndrome

However, Tourette’s syndrome is a disease that is very often mocked and caricatured. Many reduce it to patients screaming nonsense in the street. However, this only concerns 20% of patients. “It is unfortunately the image that sticks a little to the skin of this disorder”, laments Dr. Andreas Hartmann. The neurologist, who specializes in this disorder, would prefer to call it “chronic tics” because this expression is less connoted. “You have to forget this idea that it’s necessarily the bad words, the obscenities and the spectacular behaviorhe gets annoyed. It is relatively rare and, when present, it is much less significant and spectacular than one might think. These are still people who suffer, sometimes a lot.

Tics appear during childhood or adolescence. They often decrease in adulthood. For the most embarrassed patients in their daily lives, there are behavioral psychotherapies, drugs and injections of botulinum toxin to reduce tics. More rarely, surgery can be used, with the implantation of electrodes in the brain.