Tourette Syndrome is a neurological disorder manifesting as repetitive tics, gestures, or sounds, some of which can be highly visible. These range from forceful eye blinking or tongue protrusion to more complex movements like squatting or chest-tapping. Vocalizations can vary from simple noises to repeating words or uttering insults, known as coprolalia.
Despite being relatively unknown, public figures such as writer Quim Monzó and singer-songwriter Billie Eilish have helped raise awareness. Maria, an 11-year-old diagnosed two years ago, exemplifies the intensity of tics, sometimes squatting up to 300 times a day, leading to injuries from the impact. Her mother describes the significant physical and mental toll and the challenges in finding effective solutions.
Neurologist Àngels Bayés redefines Tourette not as an illness, but as a "divergent human condition," as it does not affect mental capabilities. It only becomes an illness when it causes significant physical or emotional distress. It is estimated to affect between 3 and 8 children per 1,000, with adult prevalence being less documented. It typically appears in childhood and intensifies during adolescence, though in many cases, the impact is mild and goes undiagnosed.
Historically, French neurologist Georges Gilles de la Tourette described what he termed "the disease of tics" in 1884. The current diagnosis requires the presence of both motor and vocal tics, even if they do not occur simultaneously. In Maria's case, diagnosis came at age 9 at the Hospital de Sant Joan de Déu de Barcelona, after six years of symptoms and medical consultations that had not yielded a conclusion.
The syndrome has a genetic basis, though it is believed to be a predisposition rather than a single causative gene. Environment and living conditions also play a crucial role in its onset. Available treatments include behavioral therapy, such as CBIT (Comprehensive Behavioral Intervention for Tics), which helps manage impulses, and medications that reduce hypersensitivity in the brain's dopamine receptors.
Individuals with Tourette often experience co-occurring disorders like OCD (Obsessive-Compulsive Disorder) or ADHD (Attention Deficit Hyperactivity Disorder). This can lead to social and familial difficulties, as tics may be misinterpreted as intentional or willful behaviors, resulting in stigma and bullying, particularly in educational settings. The association Tourette Catalunya works to combat this stigma through support and education.
The social success of individuals like Quim Monzó demonstrates that having Tourette Syndrome is not a barrier to a fulfilling life. The film "Incontrolable" also recounts the story of an affected individual who overcame stigma by raising awareness about the syndrome.
