Taking on Tourette: Families Reveal Their Personal Struggles

July 15, 2008— -- Nestled deep in the Finger Lakes region of New York State, there's a summer camp unlike any you've ever seen — or heard.

Known as "Camp Tic-a-Palooza" — a sly play on a disorder that has made the children here strangers in their own bodies — the camp provides a safe haven from the judgment of the outside world. Within minutes, the summer stillness erupts in an odd symphony of grunts, squeaks and screams, accompanied by a grimace and a twitch or two.

Even the strangest behaviors seem common, because all of the campers suffer from Tourette syndrome, a lifelong neurobiological disorder characterized by involuntary vocal and motor symptoms called tics. The National Institutes of Health estimates that one in 1,000 American children suffers from the disorder.

The range of tics — from constant eye-blinking, and finger tapping to barking and spitting — even astonishes those with the disorder. "I never knew people could have tics like that. That's really new to me and that's really cool," said Sid, 10, whose own symptoms include sticking out his middle finger.

Amanda Fretwell traveled all the way from Alabama accompanied by her menagerie of vocal tics. "I'll hiss at people, I'll bark at people, I'll roar at people," she explained. Fretwell is one of the four teenagers profiled by "Primetime," who documented their daily lives with Tourette in a video diary.

Normally Fretwell struggles to suppress her tics, but at camp — surrounded by others who share her disorder — she feels liberated. "I haven't ticked this much in a long time," confessed Amanda. "I can tic and not worry about being self-conscious about it."

Like a string of firecrackers, Fretwell's screams set off a chain reaction of tics in the other children, especially 12-year-old Devon, who starts barking uncontrollably. Soon the place swells in a crescendo of ticcing children. One boy, who has Tourette himself, is annoyed by the noise and demands that the screaming stop. His intolerance doesn't sit well with the other children, who feel the sting of Tourette both physically and socially every day.

Back in Alabama, Fretwell is isolated by the strangeness of her disorder. While her shrieks even surprise others with Tourette, she is humiliated by her cursing tic, a rare but well known symptom. Less than 15 percent of all patients have this form, according to the Tourette Syndrome Association. "Just because I have TS doesn't make me a freak. It's just something I do," said Fretwell.