My Tourette's is just like a troublesome toddler that won't shut up… until I start singing: Star of new television show reveals all about life with her condition
23:46 GMT, 8 September 2012
High note: Sufferer Ruth Odaji will feature on the show
As Ruth Odaji opens her mouth to sing, the velvety tones that fill the room leave Radio 1 DJ Reggie Yates stunned.
Small wonder, given that when the pair met just hours earlier, Ruth greeted him with a one-fingered gesture and a string of verbal expletives.
It is not the average way to introduce yourself, but Ruth is one of 300,000 people in the UK with Tourette’s syndrome.
The condition causes sufferers to make involuntary sounds and movements known as tics. These can include coughing, grunting or shouting out words as well as twitches.
Yet for 26-year-old Ruth – and many others – her condition is silenced when she takes to the microphone. It may sound unlikely, but pop stars Gareth Gates and Ed Sheeran have both told of how their speech impediments similarly disappear when they sing.
Now, in a new three-part documentary, Yates, who also presented BBC1’s talent show The Voice, nurtures Ruth and five other musically gifted Tourette’s sufferers to a point where they perform, tic-free, to a live audience.
MUSIC AS THERAPY
Dr Jeremy Stern, an adult neurologist at St George’s Hospital in London and an expert on Tourette’s, explains that while there is no cure for the condition and no conclusive understanding of its causes, music is a highly effective therapy.
‘We don’t know why, but tics tend to be worst when a sufferer is stressed or bored,’ he says. ‘They are vastly improved when a person is focused on something such as singing, playing an instrument or playing sport.
‘Everton goalkeeper Tim Howard has Tourette’s but rarely suffers tics when he’s on a football pitch.’
AN INVISIBLE FAULT
Tourette’s is thought to be the result of a problem with the brain or nervous system, too subtle to show up in scans. Symptoms appear to be strongly associated with a part of the brain called the basal ganglia, which plays an important role in regulating body movements.
In people with Tourette’s, the basal ganglia appears to ‘misfire’, resulting in tics. A major European study into the suspected links between Tourette’s and the throat infection Streptococcus C in infancy is about to start. Other factors include trauma at birth.
Dr Stern believes sufferers are also likely to have other behavioural problems such as Obsessive Compulsive Disorder, or Attention Deficit Disorder, with which Ruth has been diagnosed. ‘There are no specific triggers for the tics. We don’t know why some people shout out swear words, but they aren’t doing so because they want to be abusive. Even deaf people with Tourette’s will tic swear words using sign language,’ he says.
IT’S LIKE A SNEEZE
‘Tics are preceded by an urge similar to that which we get when we’re going to sneeze,’ explains Dr Stern. ‘The tic itself relieves that urge, just like a sneeze.’
Suzanne Dobson, chief executive of charity Tourettes Action, says there are different degrees of the condition. Those at the milder end of the scale blink excessively or twitch regularly, while other people make noises or make prominent physical movements such as throwing their arms about.
‘Ruth is at the very upper end of that scale,’ she says. ‘In more severe cases, patients are confined to wheelchairs for their own safety as their violent physical movements put them in danger of serious injury.’
Triumph on stage: In the final episode of the BBC series, viewers will see the culmination of 12 weeks of hard work as Ruth and fellow sufferers (pictured with Reggie Yates) take to the stage to perform
SHOCKED INTO SILENCE
Yates says the first time he heard Ruth sing he was shocked into silence. He says: ‘I know music has powerful therapeutic benefits but this was incredible.’ He admits that early depictions of Tourette’s on television shaped his preconceptions – that sufferers were strange or deranged.
‘I hope these films dispel some of the myths. After meeting Ruth, I got a real understanding that the condition is secondary to the person.’
For mild to moderate cases, there are drugs, which sometimes significantly reduce tics, but patients often experience a range of side effects, ranging from drowsiness to weight gain. In severe cases, patients can undergo surgery but the most effective treatment is helping sufferers learn how to mentally anticipate and manage the urges that cause them to tic.
FOCUSED ON SINGING
Ruth, a talented musician who also works for Tourettes Action, wasn’t diagnosed until she was 16.
After sitting her A-levels, she won a place at Middlesex University to study music but quit two years later, exhausted and distressed by her constant outbursts in lectures.
Her greatest respite from her condition comes when she sings. Also a talented pianist, she began singing at school and had formal voice coaching at university.
‘At the time, singing didn’t always make my Tourette’s shut up,’ she says. ‘Then I managed to take more control of it. Now my brain becomes so focused on singing that it silences my tics. I liken the Tourette’s to an anxious, troublesome two-year-old who’s always vying for attention. When I sing, it’s like that toddler stops and listens because they’re soothed by the sound.’
TRIUMPH ON STAGE
In the final episode of the BBC series, viewers will see the culmination of 12 weeks of hard work as Ruth and fellow sufferers take to the stage to perform.
Reggie Yates can barely contain his joy. ‘The way they all came together on stage at the end with not a tic in sight blew me away,’ he says.
Tourettes: Let Me Entertain You, starts on BBC3 tomorrow at 9pm