Chicago — At 6, Scott Loeff developed a speech impediment that no doctor could explain.
Seven years and a slew of specialists later, a team of Chicago physicians shared a diagnosis with Loeff and his parents: Tourette’s syndrome, a neurological disorder that’s characterized by tics, such as his stutter.
It has no cure or confirmed cause. It affects boys nearly four times as often as girls. Though throat clearing and eye blinking are two of the most common tics, the syndrome presents a plethora of indicators. (The best-known tic of uncontrollable cursing appears in only about 15 percent of cases, according to the syndrome’s national association.)
In fact, the lone universal attribute to living with Tourette’s might just be the societal shunning that often accompanies it.
“Kids can be cruel. It was difficult,” said Loeff, now 45, who often daydreamed of finding a refuge from the teasing. “I wanted a place where those with Tourette’s could get away from that and just be themselves.”
Enter Tourette Syndrome Camp USA.
For the last 16 summers, children from around the world with Tourette’s have retreated to a Lake County, Ill., YMCA camp to enjoy seven days of sun and fun, and to experience a rare reprieve.
For many adolescents and teens it’s the most-anticipated week of their year, a chance to socialize and relax as well as learn a bit about living with Tourette’s from the camp’s founder and director, Loeff.
“I, like lots of people with Tourette’s, suffer from OCD (obsessive compulsive disorder),” he said as a grin spread across his face. “It’s perfect: Camp is my OCD.”
This month, the camp held its winter session at the YMCA Camp Duncan cabins. Despite a smaller group than the 50-or-so youths the camp hosts in the summer, the crew didn’t cut back on activities. They played in the snow, ate cookies and watched a magic show.
“When I go on stage I don’t have tics for two hours,” said Brian Woodbridge of Columbus, Ind., the 20-year-old magician. “I can be on stage, walk off and then” —Woodbridge ticked, making a popping sound with his mouth — “And then, OK, yeah, I have Tourette’s.”
Ryan Leary, 14, of Hoover, Ala., whose head jerked through much of the show, excitedly agreed.
“I know what you’re saying. When I’m wrestling I don’t have tics either!”
Unfortunately, such tic-free stretches often convince outsiders that Tourette’s syndrome can be consciously controlled.
“Their friends and teachers will often say, ’Just stop,’.” said Mary Kay Maloney, whose son J.P. D’Amico, 18, has Tourette’s and volunteers with her at the retreat.
“They can’t, of course,” she added. “Truly, there are some days — we call them high-tic times — when I can’t believe he has the courage to walk into his school, but he does.”
J.P said he finds strength in his Tourette’s: “You can take insult after insult every day, and you can still go to school with a smile,” he said.