8th June 2023 • My Family Our Needs

Tourette’s is quite possibly one of the most misunderstood conditions and leading TS Charity Tourettes Action want to change that! This Tourette’s Awareness Month, they are hoping to increase awareness and remove many of the myths and stigma associated with the condition.

They are calling on the UK to go Green, in the hope that it will get the country talking and they will share important facts about TS on Tourette’s Awareness Day, the 7th June.  And, this year, for Tourette’s Awareness Month (and until the 2nd of July), the charity will also be following 5 people with Tourette’s as they live their lives, all shared on TikTok, in real time.

Giving people the facts

Tourette’s is still very misunderstood and when asked, most members of the public will think that it is a rare behavioural condition, whereby everyone with the condition swears. All of which are in fact FALSE statements.  Tourette’s is quite a common condition, affecting 1 in 100 school aged children, giving it a similar prevalence to Autism and childhood epilepsy.  For a TS diagnosis, a person needs to have at least one vocal tic and multiple motor tics and they need to have had tics for over 1 year, despite popular belief, they do not have to have coprolalia (involuntary swearing or profane outbursts) more info here Tourettes Action eLearning Module (tourettes-action.org.uk).

Changing perceptions

This misunderstanding and peoples perceptions of the condition often brings with it a stigma that makes people with the condition feel isolated.  Tourette’s Action want to do everything they can to raise awareness during the awareness month as they believe that with awareness comes acceptance.

This awareness month Tourettes Action have launched a campaign called #ItsWhatMakesMeTic which is following 5 individuals with the condition as they open up and share their stories on the TA TikTok channel http://www.tiktok.com/@tourettes_action  They are hoping that this will make others with the condition feel less alone and that they are not the ‘only one’.   

Tourette’s Awareness month runs from 15th May until 15th June with Tourette’s Awareness Day itself taking place on the 7th June. The charity is calling for the whole country to get involved and are urging them to share their content and also light up their buildings green in a sign of support and solidarity.

Improving lives

Emma McNally, CEO of Tourettes Action, says: “It’s shocking that a condition so prevalent is still so badly misunderstood. More than 300,000 people in the UK are known to have Tourette’s. Research tells us that many people will experience discrimination because of their Tourette’s and 75% of people will actively conceal their condition for fear of discrimination and public perception. 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. We want to use Tourette’s Awareness Month to help raise awareness of the condition, to stop the stigma and enable people who live with Tourette’s to be fully included in society.

“Tourettes Action are making an impact on how society views Tourette Syndrome. By having individuals share their stories as part of our TikTok #ItsWhatMakesMeTic campaign, we can help to destigmatise the condition and put a spotlight on what it really means for people living with Tourette’s every day. And through our #TurnItGreen campaign we hope to start conversations. We believe that through candid conversations, we can make vital progress in bringing assurance and hope to our community while changing public attitudes towards this misunderstood condition.”