Posted at 11:00 a.m.
Prime Minister, it is estimated that in Quebec, 1 in 200 children is affected by Gilles de la Tourette syndrome.1. This represents nearly 7,000 children aged 0 to 14 and 2,000 young people aged 15 to 19. If we apply this statistic to the total population of Quebec, we are talking about 42,500 people.2.
We are a group of those people3, of these families, and must fight every day to obtain services and treatment that will give us a minimum of support. We are taking advantage of Tourette’s Syndrome (SGT) awareness month to address you in order to use the moral power that is yours with your ministers. It would be important to ask them what they really know about TMS, the establishment of the necessary services and the effective interventions that can help our young people on their journey.
We want to make you aware of the physical, psychological and social suffering we experience. We are exhausted and in distress because the services, when they exist, are difficult to obtain, the assessment times are several years long and we have no support.
We are individuals and families who feel ignored by the health and social services system, and completely carried away within the education system.
For example, the assessment of a child leading to the diagnosis of TS takes three to five years in the public system. Years that are considered crucial in the development of the child. And it is no longer so rare to see our children “out of school”, that is to say that the school informs the parents that their child will have to be homeschooled since it does not have the “resources” to manage the child. (Children with TS usually have a level of intelligence that compares to the average of children their age…)
And what about the workplace. It is always recommended that people with TS talk about it with those around them, to demystify the condition and make people aware of the differences. Again, adaptation measures are not easy to obtain and the person will have to assert their rights. If self-confidence is not acquired, this kind of approach may seem impossible for the person affected.
We are ready to meet with you in order to provide you with more explanations, to introduce you to these people and to better understand the problem.
1. “Population prevalence of Tourette syndrome: A systematic review and meta-analysis”, Scharf, JM, Miller, LL, Gauvin, CA, Alabiso, J., Mathews, CA, & Ben-Shlomo, Y. (2015), movement30(2), 221-228
2. The 2021 census establishes the population of Quebec at 8,501,833 people, including 1,391,365 aged 0 to 14 and 429,395 aged 15 to 19. Statistics Canada. Table 98-10-0020-01: age (in years), mean and median age and gender: Canada, provinces and territories, census metropolitan areas and census agglomerations, including parts
*Co-signatories, members of the Association québécoise du syndrome de la Tourette, Marie-Josée Bernier, Sherazad Adib, Johanne Latreille, Martin Rochette, Marie-Jade Cholette and Benoit Kaczor