Hear the word 'Tourette's' and your mind will likely leap to an image of someone involuntarily shouting swearwords.

For many, the condition was first thrust into the spotlight when Pete Bennett burst onto TV screens in 2006, yelling and muttering expletives in the Big Brother house.

Sophia and her mum talk about life with Tourette's

But Sophia Shirley – a bright, chatty 10-year-old from Bridge, near Canterbury – is here to dispel that common image.

"Tics aren't just swearing," she explains, sitting at a table at Bridge and Patrixbourne Primary School.

Tourette Syndrome is an inherited, neurological condition, for which tics are the main symptom, prompting involuntary and uncontrollable sounds and movements.

Sophia has just one that is verbal.

"She will sort of suck her teeth when she's talking," explains her mum, Megan, a teaching assistant.

Her tics are mainly physical – complex movements involving a range of muscles.

Her most common one sees her tense her shoulders and bring her arms into her chest, while rocking.

"Then if she's standing when she's doing that she almost crunches into one leg and can hop from one leg to the other," says Megan.

"Sophia's always been very excitable, very fidgety, and just very energetic."

Her movements were initially put down to childhood squirmishness.

"At school they'd say 'she's a little bit fidgety, but that's normal for this age'," recalls her mum. "It wasn't until she got a little bit older that the children stopped dancing around and she carried on."

When she was eight, Megan took Sophia to the GP with a video of her tics, showing Sophia watching TV with her little brothers.

While they sit still and watch the screen, she repeatedly jumps up, in an apparent 'tic attack'.

Sophia explains: "When I do my tics, it makes me feel more relaxed.

"If I'm holding them in it just makes me more stressed.

"When we were lining up [at school] I used to jump, and people were like 'why are you always jumping?' A lot of people notice."

A paediatrician quickly diagnosed Sophia with Tourette's.

It is estimated that the syndrome affects one in every 100 children and that more than 300,000 children and adults in the UK live with the condition.

Charity Tourettes Action says up to 85% of sufferers will also experience conditions such as ADHD, OCD and anxiety.

Tourettes is more prevelant in boys and can last varying lengths of time, although about half of children are thought to see a "significant reduction" in their symptoms as they reach adulthood.

Megan was initially "surprised" by Sophia's diagnosis.

"I probably had the same stereotypical view of Tourette's," she said.

"There were so many people that when I said 'Sophia's been diagnosed with Tourette's', turned around and said 'but she doesn't swear'."

But Tourettes Action says just 10% of people with the condition have coprolalia – the clinical term for involuntary swearing.

"They've sort of said that it will get worse up until puberty, and then it should improve."

"Tics can be physical," explained Megan. "It can also be internal as well – they can have impulsive thoughts."

Tourette's also often affects organisational skills and memory, and cause mood swings.

Since Sophia's diagnosis, her family has learned how to manage her condition.

Advice from Tourettes Action suggests trying to avoid excited, anxious, or bored moods.

"And to actually ignore the tics, because when you talk about it and draw attention to it, it makes it worse," says Megan. "It's quite individual, as to what works for each person."

Sophia, who hopes to be an actress when she grows up, finds singing and listening to music helps, with Little Mix, Abba and Rick Astley among her current favourite artists.

"Lots of people with Tourette's use sports and music to relieve their symptoms," explained Megan. "So they're quite creative people."

Sophia was buoyed to learn Grammy-winning singer Billie Eilish has Tourette's, and was pleased to recently meet an 18-year-old girl with the condition.

"It makes me feel like I'm not alone, I guess," she said.

Keen to raise awareness of her condition, she has also given a Q&A to her classmates.

"I think we've been very fortunate with how [Sophia's Tourette's] has presented," said Megan. "They've sort of said that it will get worse up until puberty, and then it should improve.

"Because she's in such a supportive environment, we've been really lucky."

To other parents whose children might be facing a Tourette's diagnosis, she advises: "Research online, but stick to NHS sources.

"It can be a manageable condition, and it's not the end of the world.

"And you are fantastic," she adds, to Sophia. "With or without your tics."

"People with Tourette’s often feel isolated and excluded because the level of awareness in society is so low. It’s our goal to change that."

Tourettes Action CEO Emma McNally says it is "shocking" that a condition as prevalent as Tourette's "is still so badly misunderstood".

She said: "More than 300,000 people in the UK are known to have Tourette’s, but that number is probably much, much higher, as many often go undiagnosed.

"Many believe that swearing is a criteria for diagnosis, when it is not. Swearing is just a small part of the condition that affects some but not all people with TS, it is just one tic of many.

"Tourettes is a very complex neurological condition, of which we want more awareness and understanding. With awareness comes acceptance, and this is a key part of our work – enabling people who live with Tourette’s to be fully included in society.

"People with Tourette’s often feel isolated and excluded because the level of awareness in society is so low. It’s our goal to change that."

For more information, visit the Tourettes Action website.

Fundraiser

In February, Sophia broke her leg badly while running.

She was left in a wheelchair for several months, which was especially tricky for someone with physical tics.

"They had to put her on really high-dosage muscle relaxants to stop the tics, because the muscles would spasm around the break and she woke up screaming," recalled Megan.

But in June, as soon she was back on her feet, the determined little girl limped half-a-mile to school to raise money for Tourettes Action.

To donate, visit her fundraising page.

She had already collected almost £300 for the charity.