Scarlett Moffatt Tourette's documentary Channel 4: Wilamena Dyer seeks apology

Cello player Wilamena Dyer, 16, daughter of renowned Cornwall artists John Dyer and Joanne Short, first started having tics when she was at primary school in Mylor Bridge but wasn't diagnosed with Tourettes until later on.

In November 2015 she started to have around 1,000 full body tics every day which was completely disabling. It became so debilitating that she couldn't get out of bed, walk, or eat on her own.

Wilamena writes a blog and posts videos documenting her life on her website tictastic.com which aims to raise awareness of the condition. Being a cello player she finds that playing music helps a lot and reported on it for the BBC.

But Wilamena says she is furious, along with other Tourette's sufferers, following the broadcast of the Channel 4 programme fronted by GoggleBox star Scarlett Moffatt.

Scarlett Moffatt presented the programme Britain’s Tourette’s Mystery on Channel 4. Picture Channel 4

She says the programme has had a huge negative impact on the Tourette’s community with its "disgraceful, inaccurate and untruthful ‘facts’" that were shared on the programme including the concern that Tourette's was contagious or fears you could catch it from watching TikTok videos.

"It is appalling how much damage can be caused when an already misunderstood neurological condition is once again falsely represented in the media," she said. "Not only does this undo the hard work that the charity Tourette’s Action is constantly doing to advocate for the community and educate others, but it also increases the stigma and misconceptions for children and adults with Tourettes to have to deal with in their everyday lives.

"In my opinion, when someone is making a documentary about a disability it is so important for them to get their basic facts correct otherwise it will obviously cause a detrimental aftermath for people with that disability and at the end of the day it isn’t Channel 4 that is going to have to deal with the mess that they have made, it is those who have Tourettes or tic disorders who will now have to work twice as hard to be accepted and understood by those around them."

She said on the contrary to what the documentary implied, you can not catch Tourette’s Syndrome like a cold. People with Tourette’s syndrome are not in any way contagious because it is a genetic neurological condition.

Musician Wilamena Dyer has suffered with tics since childhood. Picture Wilamena Dyer

She said the presenter Scarlett Moffatt even went as far as saying that she was “worried about catching it” she said.

"This in itself is unacceptable as spreading inaccurate information on a large-scale media broadcast is so harmful to those that struggle on a daily basis to not only deal with their own symptoms but to also be constantly educating and correcting those who have been misled by stereotypes of the condition and from dramatised and false media reports or documentaries such as this one,"

She says an important piece of information that the programme failed to share in the documentary is that having tics doesn’t necessarily mean that people have Tourette’s Syndrome as there are many other possible causes. They can be the result of anxiety, tic disorders or functional tics (FND). All of which are very different. "They may all result in tics or tic-like movements but they often present in different ways and aren’t all Tourette’s Syndrome," says Wilamena.

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Another issue with Scarlett Moffatt failing to mention the difference between Tourette’s Syndrome and tic disorders is that tics disorders can sometimes only last for a short amount of time whereas TS is a life-long condition. When a person with TS becomes an adult, sometimes their symptoms can improve or sometimes they worsen, but you definitely can not suddenly “recover” from Tourettes overnight.

She is calling on people to go to the Ofcom website www.ofcom.org.uk/complaints/complain-about-tv-radio-a-website to officially complain.

"I and the Tourette's community call on Channel 4 to set the record straight and to apologise for the misinformation that they have allowed to be spread and the huge amount of damage that it has caused."