What's Tourette's syndrome?

Tourette syndrome (TS) is an inherited disease of the nervous system, first described more than a century ago by the pioneering French neurologist, Dr. George Gilles de la Tourette. Before age 18, patients with Tourette syndrome develop motor tics, that is, repeated, jerky, stereotyped, purposeless muscle movements in almost any part of the body. Vocal tics occur in the form of loud grunting or "barking" noises or, in some cases, words or phrases. In most cases, the tics come and go, and they often are replaced by different types of sounds or movements, which may become more complex as the patient grows older.

Tourette syndrome is three times more common in men than in women. The motor tics, which usually occur in bouts several times a day, may make it very hard for the patient to perform simple acts like tying shoelaces, not to mention work-related tasks or driving. In addition, Tourette syndrome may be very detrimental socially. Some patients have an irresistible urge to curse or use offensive racial terms (a condition called coprolalia), though this is not under voluntary control. Other people may not wish to be with Tourette syndrome patients and, even if they are accepted, Tourette syndrome patients live in fear of shocking others and embarrassing themselves. In time, they may close themselves off from former friends and even relatives.

The tics of Tourette syndrome often are said to be "involuntary," meaning that patients cannot stop them. This is not strictly true, however. A tic is not like a spasm, but rather a very strong urge to make a certain motion or sound. It is more like a mosquito bite that "has" to be scratched. Some patients are able to control their tics for several hours, but once they are allowed to come out, they are even stronger and last longer. Tics become worse when the patient is under stress, and usually are much less of a problem during sleep.

Some people with Tourette syndrome have trouble paying attention. They often seem "grumpy" and may have periods of great sadness (depression). Tourette syndrome patients may think the same thoughts over and over, a sort of "mental tic" known as an obsession. It is these features that place Tourette syndrome patients on the border between disease of the nervous system and mental illness. In fact, before research showed that there are abnormal chemical changes in the brain in Tourette syndrome, many doctors were convinced that Tourette syndrome was an abnormal mental state. It still is not clear whether these behaviors are a direct result of Tourette syndrome itself, or a reaction to the stress of having to live with the disease.

Most people with Tourette's syndrome have their own unique type and pattern of tics. Tics may come and go over weeks and months. They may also change from one type to another. Many people with Tourette's syndrome have episodes of tics that interfere with their daily activities. The first tics of Tourette's syndrome usually begin when children are between the ages of seven and 10 years, but tics can begin as early as two years of age and as late as 18. Tics that begin after the age of 18 are not considered symptoms of Tourette's syndrome. Tourette's syndrome may or may not continue into adulthood. About a third of children with Tourette's syndrome have no tics by the time they reach early adulthood. Another third have fewer and milder tics by the time they become adults. Another third continue to have severe tics into adulthood.

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