A Derry man living with a Tourette’s type disorder has taken the first steps in establishing a national support group for fellow sufferers.
Damian Friel spoke publicly for the first time about living with the tic disorder in the ‘Journal’ three weeks ago.
Since then he set about exploring the possibility of setting up a locally based organisation. Currently no specialist Irish based support groups exist for people living with similar disorders.
“What I’ve been told is basically that it can be done,” he says.
“I know it will be a long journey to get it going and we need to really plan how we move forward over the next year, finding out what funding is available from different sources.
“Tourette’s Action came over from England and we went to see them in Belfast last Saturday. They are great at what they do but they wont be back now until September - and they have to spend much needed money on getting over here.
“What I hope to get going is something based here, a group that would offer support to other people and to families living with Tourette’s.”
The 22-year old says he is only too willing to “take up the reins.”
“I always knew I couldn’t be the only person going through this. A friend has always really encouraged me that if the support services aren’t available I should get something going myself.”
In the weeks since he first went public about his condition he has been overwhelmed with the response.
“I’ve bumped into people since that article who have said they know someone or have a family member who lives with tics. It’s been a very positive experience.”
Damian says that article has also encouraged sufferers or parents of kids living with tic disorders to get in contact with him including local mum Ann Walker.
Ann told the ‘Journal’ reading the article had a profound effect on her.
“I read Damian’s story and emailed him and we went with my son, who has Tourette’s to the meeting in Belfast last week. My 12-year old son has had Tourette’s for a long time, it started with tics and head movements and we have been taking him to the doctors for years.”
She says shares Damian’s frustrations at the lack of support in Ireland.
“It was a massive sense of relief to know that we are not alone, that there are other people with the same fears and feelings, having the same feeling that as a mother you must be doing something wrong. Damian has been a absolute inspiration and a godsend to me and my son, his attitude is incredible.
“All of sudden we have a bigger and better understanding and have possibilities of getting more support and help,” she says.
“For years I was being told by doctors that there was nothing really wrong with my son, that he would grow out of it.”
Now both Ann and Damian are determined to support as many people living with similar conditions as possible. Anyone who would like to get in touch can email Damian via firstname.lastname@example.org - or via his Twitter account @DamianFriel. Ann can also be contacted via email at email@example.com. Damian can also be contacted via the Journal office, call 71 272251