Tourettes feels like 'trying not to blink'

A primary school girl has said that living with Tourettes Syndrome is like "trying not to blink for a long time".

Freya, nine, from County Durham, had been having involuntary tics for two years but only got an official diagnosis in March.

Now she is trying to raise awareness of the condition with her mum Louise and said: "I just tell people, I can't help my tics it's really hard and if you see me doing movements I can't help it."

Freya recently wrote a letter to the prime minister in the hope of getting more support for people with the condition and hand-delivered it to Downing Street.

"Try holding in a sneeze, it's really hard to do, that's what a tic feels like, or imagine trying not blink for a long time that's what it's like, we can't help it," Freya said.

In the letter, she detailed her experience with tics and her wait for support.

At the age of seven she remembers thinking "what is going on" after experiencing her first tic.

"I did a big movement with my arms, it was like a jolt and it just kept on happening."

Before her diagnosis mum Louise had little knowledge of the condition and took her to a GP in 2024.

However, she said her daughter was misdiagnosed with asthma, due to a coughing tic.

"She started displaying the signs when she was seven, it was hard to get support just from going to a GP and in the end we had to find specialist help out of the area," Louise said.

Another GP had suggested she would grow out of the symptoms and told the family there was no support for children under 12 in the North East - unlike other areas of the country.

"We didn't have any answers until we found Tourettes Action, I think there needs to be more support so it's not multiple appointments, it's just one," she said.

Statistics from the charity Tourettes Action reveal about one in 100 school age children in the UK live with the condition and that 56% of people wait more than a year for a diagnosis.

Freya compete nationally in gymnastic competitions which help distract her from her involuntary tics.

The family has also been supported by her teachers and friends at Hartside Academy, in Crook, County Durham.

Head teacher Dawn Simpson said: "To see Freya embrace her diagnosis and educate others it's wonderful and that's going to help other children and other families."

Freya speaks openly about her condition with her school friends Emilie and Isla-Mae.

"She explains what it is and we understand the basics of what she goes through," Emilie said.

While Isla-Mae said: "We always want Freya to feel included as it's just normal."

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