Low Awareness Leaves Tourette Syndrome Sufferers Marginalized

The film 'Hichki,' starring Rani Mukerji, portrays the struggles of Naina, a teacher with Tourette syndrome, highlighting the societal prejudice faced by individuals with the condition. Naina's journey, from being denied teaching opportunities due to her tics to facing mockery from students, underscores the broader issue of stigma and misunderstanding surrounding Tourette syndrome.

Tourette syndrome is a neurological disorder first identified by French doctor Georges Gilles de la Tourette in 1885. It is classified as one of three types of tic disorders, alongside motor tic disorder and vocal tic disorder. Tics are sudden, repetitive, and uncontrollable movements or sounds. Motor tics can manifest as frequent eye blinking, head jerking, shoulder shrugging, or specific facial expressions. Vocal tics involve making sounds like throat clearing, coughing, grunting, or repeating certain words.

The defining characteristic of Tourette syndrome is the presence of both motor and vocal tics for at least a year. However, many individuals with the condition struggle to live normally due to societal judgment. Mohd Subri Safar Mohd, Chairman of the Tourette Association of Malaysia (TAM), stated that public awareness of Tourette syndrome remains alarmingly low, despite an estimated 0.3% of Malaysians potentially having the condition. This could mean over 100,000 individuals in Malaysia are affected, based on a population of 34.3 million.

Compounding the issue, Mohd Subri noted that the tics experienced by those with Tourette syndrome are frequently misinterpreted. They are often seen as rude behavior, peculiar actions, or intentional displays. This misunderstanding is particularly pronounced as many in society incorrectly associate Tourette symptoms with 'melatah' (sudden involuntary reactions), when in fact, it is a neurological disorder requiring expert evaluation. The low rate of diagnosis further exacerbates the problem, leaving the true number of Tourette syndrome sufferers in the country unknown.