Tourette Sufferers Convene

BURBANK —  Growing up, Mort Doran knew he wasn’t like other kids.

The Canadian native had trouble concentrating, so he had to work harder than his classmates. And he had uncontrollable spasms of what most people would consider bizarre behavior: jerking his body, repeatedly counting things, twirling or prancing around, reading books by holding them with the spine precisely centered before his nose, making sure that if he touched something on its right side, he also touched the left side.

When his father suggested that Doran go to medical school, he obliged. After all, no one told him he couldn’t, despite his quirks, which had never been medically diagnosed.

On Friday, Doran, now a successful surgeon with thousands of operations under his belt, joined hundreds of people like him, some of whom traveled from as far as Australia and Norway, for the Tourette Syndrome Assn.’s ninth national convention at the Burbank Airport Hilton.

The biennial convention, first held in 1979, brings together medical experts, educators and those who have the condition to exchange information on Tourette syndrome. Most important for Tourette sufferers, however, the forum shows them that they are not alone.

“It’s like a party,” said Philadelphia Phillies right-fielder Jim Eisenreich, who spoke at the three-day convention Friday.

“It’s nice to see a whole room full of people who have some of the same things I do,” added one of Eisenreich’s admirers, 10-year-old Joey Harris of South Pasadena.

At least 200,000 Americans have been diagnosed with Tourette, but experts believe the true number is probably much higher, saying many people are either unaware that they have the disorder or don’t feel the need to report their symptoms.

Tourette syndrome, named for 19th century French neuropsychologist Georges Gilles de la Tourette, is stereotypically associated with people who can’t stop swearing. But coprolalia--the tendency to suddenly and inexplicably blurt out obscenities--is but one small manifestation of the unusual and wide-ranging neurological disorder.

Coprolalia affects about 15% of all people with Tourette, a genetic disorder that includes rapid physical and verbal actions, from repeated arm flailing, neck jerking and kicks to throat clearing, spitting or uttering other unusual or inappropriate sounds.

About half of Tourette cases include symptoms associated with obsessive-

compulsive and attention-deficit disorders.

There is no cure. Sometimes symptoms can by reduced by drugs, but many sufferers say they avoid medication because of unpleasant side effects, including nausea, drowsiness, fatigue, weight gain and depression.

“It’s important to stress that this disorder does not affect people’s intelligence,” said Elaine Fantle Shimberg, author of “Living With Tourette Syndrome.”

“And it knows no ethnic, racial or economic boundaries.”

The Tampa, Fla.-based author, who is subject to neck tics that occur mostly when she is tired, has raised three children with the disorder and is well aware of the frustrations faced by the afflicted as well as their family members.

Shimberg recalled the looks of icy consternation from the row in front of them when her daughter began yelping during a performance of “Swan Lake” by the Royal Ballet in London.

“She couldn’t help it,” Shimberg said. “I was embarrassed because it was disturbing people. I felt heartache for her because she so looked forward to the event and I felt frustrated because mothers are supposed to protect their little girls. I think we ended up leaving,” Shimberg said.

The onset of the disorder usually occurs between the ages of 7 and 18, shattering what Shimberg calls the “image of the perfect child.”

“My father would get mad at me,” said Tourette Syndrome Assn. board member Paul Devore, an Encino financial planner. “He thought I was trying to irritate him. I felt terrible. I knew I couldn’t help it.”

Because of his childhood rejection, he was surprised by his success in business, Devore said. “It was a shock to find out people would want anything to do with me. I never believed I was good.”

Ignorance of the disease is also a problem in schools. Many times, children with Tourette can hold back eye blinking or twitches. For children who can’t, parents have to brief each new teacher on their condition.

“The education system has a tremendous impact on a child’s ability to cope in the classroom,” said Jan Harris. For Harris’ son, Joey, who has a neck tic and occasionally experiences fits of uncontrollable rage, the difference between “doing well” and “having day-to-day behavior problems” is an understanding teacher, Harris said.

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Brad Cohen, 22, of Atlanta went from being “the kid in the corner” to teaching elementary school. Cohen, who lets out sporadic barks, which he recalls drew a lot of attention during a visit to Universal Studios, was confidently defiant.

“I have what I have, and I have to do what I’m going to do.”

As for Mort Doran, he never let the condition stand in his way of becoming a surgeon. Although he often has to tug at his gloves, pull on his gown or walk around the operating table several times during an operation, his hands are “rock steady” when he is actually making incisions and doing the rest of the job, he said.

“People with Tourette are dealt cards that aren’t great,” Doran said. “But it’s not the worst thing.”