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She was overjoyed, Armie Lacroix, with the knowledge that swept through the conference center of the Royal Museum for Central Africa in Tervuren like a beneficent wave. After years of searching for a correct diagnosis, her ten-year-old son Gaspard was recently diagnosed with Tourette syndrome. At this fifteenth edition of the European Conference on Tourette Syndrome and Tic Disorders, the first in Belgium, the Brussels resident anxiously flitted from one workshop to the next. “What a difference from what the doctors told us right after Gaspard’s diagnosis,” Lacroix said during a coffee break. “If we want to get proper treatment, we will have to go to Paris or Canada with our son. And now I’m learning all kinds of things here so close to home.
English, French, German, a tangle of languages developed in the coffee room. But the Dutch were not listened to in the conference. Seonaid Anderson said, “I don’t understand it myself.” “Welfare Minister Hilde Kravits (CD&V) recorded a video message, but otherwise Flanders’ interest was virtually non-existent.”
Anderson, a Scottish psychologist living near Durbuy, founded this international conference in association with the Tourette Association Ictic-Jetique. With a list of participants in hand, she said: “There are people here from Australia, Canada, Iceland, Sweden, Norway, Germany, France, Italy, Greece, the Netherlands, you name it. But we’ve got to be the only ones determined to be experts in Flanders.” The Dutch-language workshop had to be canceled because no one turned up. Isn’t that unbelievable?”
wristband
It is estimated that 1 in 100 people has Tourette’s, a long-term combination of physical and vocal tics. Also in Belgium. And yet our country is years behind in the diagnosis, treatment, and awareness of Tourette’s. Musician Wouter Berlein is the godfather of ictic-jetic, but better-known artists have been in the closet for some time – unlike, for example, Billie Eilish or Lewis Capaldi, who have already shared their lives with Tourette’s more than once. testified freely about. Beyond that, things are remarkably quiet in the academic world and in education.
“It’s disappointing,” said Monique Verstraeten of Iktik-Jetik. “Doctors are hardly aware, because there is no attention for Tourette’s during their training. And people who suffer physical complaints because of their tics, for example, still do not get reimbursed for their visits to physiotherapists. If When we take it up with the relevant services, we do not get a reply.”
Andersen: “Tomorrow, a British company will introduce a new technology that appears to be able to significantly reduce tics with brain stimulation via a wristband. But not a single Belgian company is interested. This country Why don’t you want to be at the forefront of this research?”
optimistic
Taboos and misconceptions persist. Most people with Tourette’s don’t swear – really – anymore: the sometimes spectacular and somewhat aggressive tics have nothing to do with a bad character. Tourette’s is a disorder at the intersection of neurology and psychiatry, in which both heredity and environmental factors play a role.
Armony Lacroix has also realized this now. “Now that I know the prejudices are wrong, I want to know everything there is to know about Tourette’s,” Gaspard’s mother said. Beside him, Perrin Collard nodded emphatically. The French-speaking psychologist, herself the mother of a boy with Tourette’s, was one of the few Belgians present at the congress. “In the absence of specialists, after my son was diagnosed, I retrained myself as a Tourette’s specialist,” Collard said. “Because we have to remain optimistic: If we’ve been successful in getting Tourette’s attention in other countries, we should be doing the same, right?”
