Dr. Arthur Shapiro's Battle Against Tourette Syndrome Gets a Boost from TV's Quincy

UPDATED 03/30/1981 at 01:00 AM EST Originally published 03/30/1981 at 01:00 AM EST

Like 27 million other Americans, Arthur Shapiro watched the recent episode of the NBC series Quincy, focusing on Tourette Syndrome, which causes its victims to involuntarily jerk, grunt, bark and sometimes swear. Shapiro, a New York psychiatrist, noticed something that escaped most viewers: Jack Klugman, who plays the medical examiner hero, was dealing with symptoms that more closely resembled segmental dystonia, a slightly different disorder.

Otherwise, Shapiro was pleased that the show gave national exposure to Tourette, a little-understood affliction he says may affect as many as 3.5 million Americans. (The New York-based Tourette Syndrome Association officially estimates there are 100,000 cases.) Shapiro was equally delighted when Klugman later testified at this month's congressional hearings on "orphan drugs." The phrase refers to medicines for conditions like Tourette or Huntington's disease with such relatively low incidence that pharmaceutical companies do not research extensively because of the dubious profit potential.

"We are 10 years behind other countries in producing drugs for Tourette," laments Shapiro. "The law, the government bureaucracy and the drug companies each blame the other." Shapiro, 58, himself has treated or studied 1,000 Tourette cases, probably more than any other doctor. His involvement began in 1965, when a neurologist referred a patient to him for psychotherapy. She was a young secretary whose symptoms included tongue protrusion and "coprolalia," the medical term for shouting obscenities. "I had the instinctive clinical feeling," he says, "that my patient's condition was not psychological but organic."

After weeks of research, he became convinced his patient was suffering from Gilles de la Tourette Syndrome, named for the French doctor who first described it in 1885. (Suspected historical victims include the English litterateur Samuel Johnson.) Shapiro then treated the woman with psychotherapy, hypnosis and finally a succession of medicines before reading that a French physician four years earlier had successfully treated a Tourette patient with a drug called haloperidol. It was the 37th medication tried by Shapiro—and it worked.

During the next seven years Shapiro ministered to 32 more Tourette victims. "We thought we had exhausted the supply of patients," says Shapiro's wife, Elaine, a psychologist who works with her husband at his Tourette and Tic Laboratory and Clinic at Manhattan's Mount Sinai Medical Center and at their at-home office in Scarsdale, N.Y. But after a 1972 Wall Street Journal article on Tourette mentioned Shapiro's work, hundreds of sufferers and their families told him of frantic searches for cures, and even of suicides. Frustrated by the social and psychological effects of the condition, some had sought frontal lobotomies. Others had tried electroshock treatment without success. A Texas woman told how her father, a fundamentalist minister, had kept her sister in a barn, believing she was possessed.

Tourette usually first appears between the ages of 2 and 15 and afflicts three times as many boys as girls. Some doctors believe an excess of dopamine, a brain chemical, overexcites some cells, triggering the syndrome. While haloperidol and other drugs control the symptoms, side effects are sometimes disturbing, which makes imperative more research into the "orphan drugs." Shapiro himself believes Tourette may be a genetic disorder affecting a tiny area of the brain called the basal ganglia. "But we need more evidence," he concedes, "and I don't have it yet."

Such insistent curiosity is typical for Shapiro, son of a poor family in the West Bronx, a graduate of the University of Chicago Medical School and a onetime activist in the left-wing labor movement. "Arthur," he recalls his grandparents saying, "always wants to know how the fly walks on the wall." It took some years, the psychiatrist reports, before he realized that it was a compliment.

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