Tourette’s makes people twitch or blurt. It isn’t bad behaviour

A special announcement greeted the audience at last month’s BAFTA awards in London: “John has Tourette’s syndrome, so please be aware you might hear some involuntary noises or movements during the ceremony.” It was about John Davidson, whose life story was adapted into the award-winning movie ‘I Swear’. He has a severe form of the condition, which causes him to inadvertently utter offensive words or phrases, his verbal ‘tics’ at the event causing much debate. Neurologist Dr Sangeeta Ravat from Mumbai’s KEM Hospital tells Eshan Kalyanikar that the condition could be more common in India than we think, and why we need to raise awareness and be more sensitive about it.BAFTA’s brush with Tourette’s syndrome has made everybody curious, especially after the racist slurs uttered by Davidson. What exactly is the condition and how prevalent is it in India? Tourette’s syndrome is a brain-based neurodevelopmental condition that causes involuntary movements and sounds. We call them tics. These usually start during childhood. It is not extremely rare. About one in a hundred children may have it. In India, few large studies exist and many mild cases probably go undiagnosed. There is a lack of awareness about it. However, at our OPDs, the staff can now instantly identify a case of Tourette’s and refer the person to the neurology department.What are the genetic factors associated with it?The syndrome is rarely caused by a single gene. Instead, it is considered a polygenic disorder which means that there are numerous genes, each contributing a small amount to the overall risk. These genes influence brain cell growth, the development of specific regions, and the regulation of neurochemicals. In rare cases, mutations in specific genes such as SLITRK1 or NRXN1 have been identified. While genetic factors increase susceptibility, they do not provide certainty. Possessing risk genes does not guarantee a Tourette’s syndrome diagnosis, but it does mean that the brain is more biologically predisposed to developing tics. Could you explain what happens inside the brain of a person with Tourette’s syndrome? The hormone and neurotransmitter dopamine is the brain messenger that helps regulate movement. In Tourette’s syndrome, dopamine activity appears to be too strong or imbalanced in movement-control circuits. This is especially in the basal ganglia and frontal cortex of the brain. The result is unintended motor and vocal outputs.What role does coprolalia have to play in it, and why is it associated with utterance of foul words?Coprolalia is the involuntary uttering of words in repetition. Most commonly, these are socially inappropriate or offensive words or phrases. Those with coprolalia have no intention to hurt anyone with their words. It’s purely involuntary. Though it is not very common and occurs in about 10-15% of people with Tourette’s syndrome, we still do not fully understand the ‘why’ and ‘how’ behind it. But as medical science and research is advancing, we certainly understand more about the condition than we had ever before.What’s most important for a parent in India who is noticing these symptoms to keep in mind?Parents must know that tics are involuntary and neurological — this is not “bad behaviour” and it’s not the kid’s fault. Punishment in such circumstances is uncalled for and can have a negative impact on the child’s well-being. Instead, the child needs medical assessment and parental support.How is Tourette’s syndrome treated at KEM Hospital?We see patients with the condition from across the state and even the country. However, they come to us through several referrals; direct walk-ins are rare. There is no cure to Tourette’s syndrome, but the tics can be managed with therapy, medication, and support. With appropriate care, most people with Tourette’s syndrome can lead normal and fulfilling lives.