Mel Sykes revealed yesterday that he had self-diagnosed Tourette’s, describing himself as ‘totally different’.
The 52-year-old TV presenter’s announcement shed light on the poorly understood tic disorder.
Tourette’s, which usually starts in childhood, is thought to affect around 300,000 Britons and 1.4 million Americans, including Lewis Capaldi and Billie Eilish.
Although rare, researchers acknowledge that it is entirely possible that adults can be suddenly stung by a tick.
Candid: Melanie Sykes, 52, revealed she diagnosed herself with Tourette’s after previously detailing her ‘life-changing’ autism battle
Dr Melina Mali, an Oxford University fellow who specializes in Tourette’s, said: ‘It’s very rare.’
In fact, it’s so uncommon that there are no statistics on how common adult onset tics are.
Even researchers admit they can’t answer that question and the NHS says the phenomenon only happens ‘very occasionally’.
Doctors believe that adult-onset tics may simply be a ‘reactivation’ of childhood.
These types of ticks can be so mild that, as children, the sufferers did not notice them. After all, their parents can only glare at them.
How to tell if you’ve got Tourette’s
Tourette’s syndrome is a neurological disorder that causes involuntary tics.
There is no single test for Tourette’s syndrome.
If you have had several tics for at least a year, you may be diagnosed with Tourette’s.
Dr Melina Mali says, ‘There are many conditions that include tics that may not be Tourette’s.
He added: ‘Tourette’s is a very specific condition, you have to have both vocal tics and motor tics to be diagnosed.’
There is no cure for Tourette’s syndrome, and most children with tics do not need treatment for them.
But behavioral therapy ad medications can help control tics.
Common tics include head shaking, twitching, blinking, and the internationally recognized hallmark of Tourette’s — uncontrollable swearing.
Still, the unexpected development of tics doesn’t necessarily signal Tourette’s, said Dr. Mali, who last year co-authored a paper on tics in youth.
He told MailOnline: ‘There are many conditions in which the tics may not be Tourette’s.’
Tics can occur randomly and are associated with stress, anxiety and fatigue, according to the NHS.
Taking illegal drugs and health conditions like cerebral palsy and Huntington’s disease can also trigger agitation, experts say.
‘Tourette’s is a very specific condition,’ adds Dr Mali.
‘To be diagnosed, you have to have both vocal tics and motor tics.’
Vocal tics include humming or shouting certain phrases. Blinking of the eyes or hand twitching are examples of motor tics.
Moreover, Tourette’s is usually only diagnosed if someone has endured tics for more than a year.
And current diagnostic criteria say that tics should begin before age 18, Dr. Mali said.
But, in some cases, doctors still diagnose adults with Tourette’s.
An example is Elizabeth Hall, a mother of three from Bedfordshire, who was diagnosed with Tourette’s in her 40s.
As she approached menopause, she began to experience physical pain.
Miss Hall, who was the subject of a Channel 4 documentary in 2020, did not think it was Tourette’s as she believed it was only a childhood condition. But when they first try to cover it up, they are caught later.
His vocal tics can be dirty, obscene or racist — including giving Nazi salutes and calling people ack***.
Her son Robert, who is now in his early 20s, also has the disorder – but started showing symptoms when he was seven.
Late-onset tic disorders in adults are uncommon, but may be more common than we realize, according to a Canadian study published in 2000 in the Journal of Neurology, Neurosurgery and Psychiatry.
Although there is no evidence of an increase in Tourette’s diagnoses in the UK during the lockdown, there has been an incidental increase in teenage girls developing tics.
Specialist clinics at Great Ormond Street and Evelina Children’s Hospital in London reported that no more than six teenage girls had been given ticks in a year before the epidemic.
But in March 2021 there were three or four referrals a week.
Experts say these ticks are triggered by stress and anxiety during the lockdown and seeing people with ticks on social media – although experts say this only happens to those who are already susceptible to ticks.
Appearing on an episode of Alan Carr’s Life’s A Beach podcast, which aired Monday, Sykes talked about her new book in which she discusses being a woman in media and her journey to being diagnosed with autism.
In the interview, Carr confirmed he was able to swear on the podcast where he said: ‘Oh well, but I’ll try not to, because I’ve just discovered I have Tourette’s.’
The former model added: ‘I’m wired in a completely different way and I’m just realizing that.’
After the podcast was released, he clarified in a tweet: ‘Hello there. For the record I have not been “diagnosed” with Tourette’s.
‘I identify with my study and understanding of pre-existing “conditions” that are at hand in some autistic people.’
What is Tourette’s?
Tourette’s syndrome is an inherited neurological condition that causes you to make involuntary movements and sounds called tics, according to the NHS website.
Motor tics may include eye blinking, shaking of the neck and head, and arm and leg movements, while vocal tics may include clearing the throat, repeating words or phrases, stuttering, and shaking.
However, according to the action of Tourette’s, tics can occur in almost any part of the body including tics that cause deep tension in the abdominal muscles known as ‘internal tics’ or ‘stomach tics’.
According to Tourette’s Action, it is not uncommon for people with Tourette’s to experience conditions such as obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD) and anxiety.
The charity stresses that the biggest misconception surrounding the condition is that it forces everyone to swear.
But coprolalia, the clinical term for socially unacceptable sound-producing tics, only affects about 15 to 20 percent of people with Tourette’s.
Tourette’s is thought to affect 300,000 Britons and more than half a million Americans suffer from the disease, most of them children.
The condition usually begins in childhood, between the ages of two and 14, before progressing over several years. Sometimes it goes away completely.
There is no cure for the syndrome, but treatments — such as therapy and medication — can help manage symptoms.
Source: Tourette’s Action
Celebrities have been diagnosed with Tourette’s disease
The 21-year-old singer was diagnosed with the neurological disorder when she was just 11 years old.
Billie Eilish, 21, was diagnosed with the neurological disorder when she was just 11 years old
She opened up about her condition after contracting a tick last year while appearing on season four of David Letterman’s Netflix talk show My Next Guest Needs No Introduction.
‘I never tic, because the main tics that I do constantly, all day long, are, I move my ears back and forth and raise my eyebrows and click my jaw… and flex my arm here and bend this arm, this Flex the muscles,’ Billy told Mr. Letterman.
‘They’re things you’d never notice if you were just having a conversation with me, but they’re very tiring for me,’ said Billy.
‘Not that I like it, but I think it’s part of me. I made friends with it. And so now, I’m pretty confident about it,’ she admitted.
Glaswegian singer Lewis Capaldi, 26, revealed to his fans that he was diagnosed with Tourette’s after experiencing tics on stage.
Singer Lewis Capaldi, 26, says he experiences tics on stage. She explained that she had recently been diagnosed and was getting botox injections to freeze her muscles to try to control the tics.
The Hold Me Will You Wait singer told fans in an Instagram Live session in September 2022: ‘I’ve been diagnosed with Tourette’s. I wanted to talk about it because I didn’t want people to think I was taking cocaine or something.
‘My shoulders shake when I’m excited, happy, nervous or stressed. It’s something I’m living with. It’s not as bad as it looks.’
He explained that he was recently diagnosed and was getting botox injections to freeze his muscles to try to control the tics.
Mother, who developed Tourette’s at a young age
Elizabeth Hall, who developed Tourette’s when she was 40, says she can be vulgar, obscene or even racist when she’s ticking.
The mum-of-three appeared on Channel 4’s The Mum Who Got Tourette’s in April 2020 with her husband Simeon, 50, her son Robert, 17, who also suffers from the condition, and her daughter Eloise, 20.
Elizabeth Hall says she developed Tourette’s in her 40s
The Bedfordshire mum said in the Channel 4 documentary that they were ‘like any normal family but with a few more vows’.
When he first experienced tics he didn’t know it was impossible for adults to get them.
She admitted: ‘When the physical tics started, I tried to cover them up. I thought I had a brain tumor, or Parkinson’s, or some form of psychosis. I didn’t think I had Tourette’s even though I dealt with it every day with Robert. I saw four specialists before I took it. I didn’t know adults could get it.’
‘I know I started breaking out when I was approaching menopause, so I suspect there’s a hormonal issue there too,’ says Elizabeth. ‘Looking back, as a child I used to rock backwards and forwards, but my mum wouldn’t tell me. I wonder if I suppressed things then.’
As an adult, he was in denial for months. ‘It started moving my face. I’ll try to cover it, and squeeze the muscles. Then it started with my eyes.’
Five years later, however, he has developed a surprising acceptance. ‘You have to,’ she argues. ‘You have to accept it, learn to live with it, make friends with it.’