YOUNG people with Tourette Syndrome and their carers may set up their own support group after an informal drop-in session was held recently.
The meeting at St Anne’s Community Service Centre, The Ridge, was led by Dr Ann-Marie Skarstam, consultant psychiatrist with the Child and Adolescent Mental Health Service, and representatives from the charity Tourettes Action.
There is currently no support group in Hastings for those with Tourette Syndrome, the nearest group being in Brighton.
However one in 100 school age children has the condition, which is marked by involuntary tics (movements and sounds), and for many this continues into adulthood.
Dr Skarstam said: “There are many children in this area who have Tourette Syndrome and it is just really a case of getting them together.
“This afternoon I could see people nodding and turning to each other and saying ‘Yes, that’s what it’s like for us’.”
Ellie Davies, 21, a student from Gloucester, shared her day-to-day experience of Tourette Syndrome and answered questions from the group.
She spoke of the misunderstanding that surrounded the condition, both from the point of view of getting an early diagnosis from GPs, and among the general public.
“It took me eight years to get diagnosed,” she said. “Doctors often think with children, that they will just grow out of it.
“There is a lack of understanding of Tourette’s, as many people think that it is all about the swearing, whereas in reality, only one in 10 people with Tourette’s do that.
“It’s really good to be in an environment where everyone knows what you are going through.”
Tourettes Action, a Surrey-based charity, offers information and support to people of all ages with Tourette Syndrome, and in particular supports the set-up of Tourettes Action groups nationwide.
Helen Robbins, services and events officer for the charity, said: “From this meeting we hope that people will be encouraged to set up a group in Hastings.”
For more information on support groups contact Tourettes Action on 01276 482903 or email Julie Collier at firstname.lastname@example.org.