LEWIS CAPALDI’s moving performance at Glastonbury has shone a light on Tourette syndrome – which the singer was diagnosed with only last year.
The 26-year-old chart-topper lost his voice and relied on the audience to sing along with him.
Now he is taking a break from performing for the “foreseeable future”, saying he needs time to adjust to the impact of living with his condition.
Emma McNally, CEO of the charity Tourette’s Action, hopes Lewis’s openness about his struggle will help others living with this debilitating neurological condition.
She told Sun on Sunday Health: “Millions have seen the pain, frustration and sheer exhaustion Lewis suffered on stage and will now have an idea about the symptoms of Tourette’s.
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“Lewis is just at the start of his journey but hopefully by being so open he’ll help shine a light on this condition to provide others with better support and treatments in the future.”
‘Feeling of shame’
Tourette’s often starts at age six or seven, and affects one in every 100 schoolkids in the UK — with boys three times more prone to it than girls.
Symptoms will typically peak around puberty then settle but for some people it continues into adulthood.
Key features are involuntary tics — rapid, repetitive twitches such as eye-rolling and blinking, and shrugging, jumping and twirling, as well as sounds like tongue-clicking, whistling, coughing grunting and, and, less often, swearing.
Tics can be triggered by stressful life events, such as problems at school, and by boredom, anger or excitement.
About 15 per cent of people living with Tourette’s also have coprolalia — which causes involuntary and repetitive swearing or use of obscene language.
Although causes of Tourette’s are not yet fully understood by scientists, research has found that genes can play an important role.
Emma added: “Tics can have a huge impact on a person’s life, both physically and mentally. Almost all people with Tourette’s report that they experience daily pain from tics, mostly due to the repetitive nature.
“They also suffer fatigue and frustration and many report a feeling of shame, mostly due to the reactions they receive in public.”
An estimated 300,000 people in the UK are living with Tourette’s, with often little or no real sources of support that they are able to turn to.
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A recent survey of more than 1,000 people by Tourette’s Action found three in five of those diagnosed are discharged at the same appointment.
There is currently no cure, just management techniques — and Emma says there are still no official guidelines from the National Institute for Health and Care Excellence (NICE) on how to diagnose, manage or treat Tourette’s, despite decades of calls for this.
She added: “It’s not deemed a health priority, which is simply horrific.
“Tourette’s has similar prevalence to autism and childhood epilepsy, which both attract massive public funding.”
Millions have seen the pain, frustration and sheer exhaustion Lewis suffered on stage and will now have an idea about the symptoms of Tourette’s.
Emma McNally
There are 20 NHS specialist Tourette’s clinicians in the UK — 14 of whom are based in London leaving large parts of the country without any experts for diagnosis or care.
The first line of treatment is comprehensive behavioural intervention for tics, during which a specialist encourages a patient to replace their usual tic with a different one — a “competing response”.
The second line of treatment is antipsychotic medication — which can have complicated side effects both physical and emotional.
But there is now a new breakthrough — which singer Lewis has been trialling.
A smartwatch device called Neupulse is being developed by researchers at Nottingham University.
It aims to reduce Tourette’s tics by intercepting signals to the brain.
After Lewis was invited to give the gadget a try, project leader Professor Stephen Jackson described the results as being “remarkable”.
Lewis was also encouraged by the experiment.
He said the stimulation made him feel calmer, suppressing the head and shoulder tics which can be painful for him.
- To discover out more about Tourette syndrome, go to tourettes-action.org.uk.
'I’ve rechannelled my Tourette’s into passion…it’s a superpower'
TELLY host Aidy Smith admits Tourette’s almost broke him, but now he sees it as a superpower, writes Alice Fuller.
Aidy, 32, who presents Amazon Prime travel show The Three Drinkers, was diagnosed after a teacher noticed his coughs and a twitch in his neck.
He said: “My childhood years were hell because of my tics. I was made to feel shame.
“I spent years trying to repress my tics at school, but the moment I got home they’d come out. They need to come out.”
He now urges Lewis to “take things slow”.
He said: “It takes time to understand what’s going on inside your body.
"But with support, you can channel Tourette’s into positives.
"I’ve rechannelled my Tourette’s energy into passion, a superpower.
“We’re more productive than the everyday person.”
