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Common myths about Tourette syndrome are preventing young people from recognizing early signs of disability and seeking help, warn experts and patients living with the disease.
Studies show that around half of all cases of the neurological disorder - which causes involuntary behavior - go undiagnosed, leaving thousands without vital support.
“There is a lack of understanding of the condition among the general public,” said Dr. Melina Malli, Tourette syndrome researcher at Manchester Metropolitan University. "People refer to stereotypes about what people with Tourette's should do - like swearing - so those with lesser-known symptoms may go undiagnosed."
Dr. Wilson Tsai was diagnosed with Tourette's during medical school, but has become a heart and lung surgeon based in the United States (picture posed by model).
Studies show that around half of all cases of the neurological disorder - which causes involuntary behavior - go undiagnosed, leaving thousands without vital support
The concern comes as an upcoming BBC radio documentary attempts to dispel some of the most commonly held stereotypes about Tourette's.
Presenter and activist Aidy Smith, who has Tourette's, aims to walk listeners through the range of symptoms that go well beyond shouting obscenities - in fact, only ten percent of people with Tourette's exhibit such behavior.
Much more typical for those affected are vocal tics such as coughing or grunting and motor tics - involuntary movements - such as eye rolling, head nodding and twitching of the limbs.
One of the most fascinating people Smith meets is US-based heart and lung surgeon Dr. Remarkably, the tics disappear completely when he undergoes surgery – lung and esophageal cancer removed.
“It gives me that moment where I'm not constantly moving because of Tourette's syndrome,” he says.
Dr. Tsai was eventually diagnosed with Tourette's while in medical school, prompting a teacher to cruelly tell him that he would never be able to perform surgery.
“It actually motivated me to prove him wrong,” he says. "I think that's why I chose one of the most difficult paths in surgery. We can really do anything."
Dr. Tsai's mysteriously disappearing tics are not uncommon, and studies have found that Tourette sufferers often find that their symptoms are suppressed when they are engaged in a challenging mental task.
Smith, who was diagnosed with the disease at age 10, has primarily motor tics and does not curse or make inappropriate gestures. But at age 15, he discovered that speaking to an audience could almost make his tics disappear.
He says: "The moment I was on stage, my tics subsided and the excess energy that would have flowed into them became a catalyst for my success."
On the show, Smith also speaks with others who believe their Tourette's has given them extraordinary talents.
This phenomenon has been highlighted in several medical studies - particularly in relation to faster reflexes and increased creativity - and is thought to be caused by an increase in the brain hormone dopamine that patients experience when they have a tic, although this connection is still proven.
Dr. Tsai believes his Tourettes helped him develop exceptional martial arts skills at a young age, and he is now a black belt in jiu-jitsu.
About one percent of the world's population has Tourette's disease, and symptoms usually appear in childhood. The condition often improves within a few years or disappears completely.
Emma McNally, chief executive of the charity Tourettes Action, says a diagnosis in childhood is crucial. She adds: "It allows the child to access support networks and services. If a child does not have support at school, their education can suffer, as can their mental health."
But Dr. Jeremy Stern, consultant neurologist at St George's University Hospitals in south London, warns that getting a diagnosis is a challenge: "People can wait a year for specialist help. Some children seek help from mental health services but are not eligible when experts suspect Tourette's because they do not specialize in the condition.
Smith says his years without a diagnosis - between ages seven and 10 - were the "darkest of his life." In an interview with his parents for his documentary, his father Richard says one of the most upsetting aspects was seeing his son "crying and saying, 'Please make it stop' - which of course we couldn't do."
Richard adds: "The imitation, the teasing...adults staring and reprimanding you - thinking you're just a badly behaved child - even people going somewhere else on trains to get away from you. All because you had tics you couldn't help."
Treatment is available for Tourette's, including cognitive behavioral therapy, to help people figure out what triggers their tics and manage them. There are also medications that affect dopamine levels.
But many people with Tourette's also think that their condition doesn't need treatment and that others should just accept their tics.
“It would help to see more people with Tourette on television programs,” says psychologist and Tourette expert Dr. Seonaid Anderson. “And the condition shouldn’t be the focus of the plot, just another aspect of her character.”
- Die Wahrheit über Tourette ist am 31. Mai um 11 Uhr auf BBC Radio 4 zu sehen.