Posters are going up across Manchester during Tourette’s Awareness Month to get people thinking how much they really know about the commonly-misunderstood condition.
Tourettes Action has arranged for large displays to be put up at bus and railway stations in the city centre to get across important messages that the condition is often far more complex than the public realises.
The charity has also put together an awareness video which it is hoped will reduce the stigma of Tourette’s and celebrate the individuals who live with it.
One Greater Manchester parent has also spoken out about some of the difficulties families of young people with the condition continue to face.
What are the posters that have been made and where will they be displayed?
Tourettes Action has put together posters which will be displayed at a number of bus shelters across Manchester during the awareness month.
Railway travellers at Manchester Piccadilly station will also see the awareness posters and there will be ones on display at the Weaste and Langworthy Metrolink tram stations too.
They will be on display between 23 May and 5 June.
The poster explains that Tourette’s is about far more than the tics which are the most obvious aspect of it and people with the condition are often battling other issues as well including ADHD, OCD and regular pain.
The message is about explaining what Tourette’s really is and getting it across that in many cases it is not what people think.
An awareness video has also been made in which people with the condition talk openly about the impact it has on their lives, both positive and negative.
What has Tourette’s Action said about the awareness month?
Tourettes Action CEO Emma McNally said: “At the moment Tourette’s is one of the most misunderstood conditions out there.
“It’s portrayed as ‘the swearing condition’ but swearing isn’t a criteria for a diagnosis. We want to get the message out about what Tourette’s really is.
“We think that will bring about acceptance and end the stigma that is associated with it.
“Tics are just one piece of the puzzle. One of the main things I didn’t realise before it affected our lives was the pain people experience. Everyone I know who’s got Tourette’s suffers from pain daily throughout the body because of the tics.”
Emma says that currently people with the condition can face hostility, ridicule and even violence when out and about in public if they experience tics.
She said: “People with Tourette’s face people staring at them, laughing at them, shouting at them. We get told of people being beaten up, there are horrific stories going round.
“We want to enable people with Tourette’s to be fully included in society, and at the moment they’re not because of the lack of awareness.
“People with Tourette’s are much more than their tics, they have got a lot to celebrate. They very often say they are creative people and getting engrossed in something like music or art or sport helps them with their tics.”
Emma is also hoping businesses and companies will get in touch during Tourette’s Awareness Month, which started on 15 May and runs until 15 June, to share the messages on social media or by putting up posters in their offices.
‘Medical professionals and schools need to be more aware of it’
Pamela Evans’ nine-year-old daughter Sofia suffers from a wide range of severe tics which when they started progressed quickly from being vocal to physical, such as hitting herself.
Pamela spoke about the frustrations parents of children with Tourette’s experience, such as inconsistent approaches even by trained medical professionals and varying levels of assistance from the world of education.
She said this is where she would most like to see knowledge of the condition raised during the awareness month.
Pamela, who is from Marple in Stockport, said: “When Sofia got her diagnosis we were told you should never chastise a child for tics and not to treat it as misbehaviour or expect them to hold it in, but recently I took her for an appointment and when Sofia was talking loudly, the person said ‘inside voice, inside voice’ and told her off for her language.
“The advice you are given can be extremely contradictory and as a parent it is extremely confusing.
“Medical professionals are supposed to be in the know and help parents and children but they need more awareness themselves because it’s not working. I know I’m not the only parent who feels like that.
“Sofia is at a very supportive school and they work with whatever is happening on that day, but I know we are one of the lucky ones.
“A lot of people in schools just aren’t aware of it and what it entails.”
Pamela is also keen to support the awareness month’s message that Tourette’s should not put restrictions on the lives of people who have it.
She said: “You shouldn’t let Tourette’s stop you doing anything. I have an excavation company and I’m a digger driver and I’m teaching Sofia how to do that.
“We can do that in a safe way and it can be something that helps her concentrate. She might be able to do that and it will show her you can do anything.”
‘You are not alone’
Emma said that one of the important aspects of the awareness month is to highlight the organisations and grassroots groups which exist to help people who have Tourette’s.
She said: “If you or a member of your family has Tourette’s don’t be alone. Reach out to the charities and support groups.
“Often it can feel like a lonely journey but you are not alone.
“There are lots of people out there who will give you support. Tourette’s is not a rare condition, even though lots of people think it is. It affects about one in 100 children.
“You will need the support from other people on your journey.”