Tourette syndrome (TS) is a neuropsychiatric disorder characterized by repetitive movements (motor tics) and sounds (vocal tics). TS is generally lifelong, though specific tics tend to come and go, and severity changes over time. There are other, generally rare causes of tics, such as infection or stroke, but when no specific cause is apparent and tics fall into the pattern described above, TS is diagnosed. About one in 200 people have TS, often in a fairly mild form, but about 2% of the population has tics for at least a year.
Because of research involving family pedigrees and twins, we know that TS is inherited. However, the exact gene(s) involved have not been tracked down so far. Since the presence or severity of tics can differ even between identical twins, other factors must also be involved. Many investigators around the world are studying TS to discover what causes it and how the symptoms are generated in the brain.
What is it like to have TS?
People with TS do not decide to have tics. However, with effort they can hold them back. Think of the last time you were at the symphony or at church and you had a tickle in your throat. Maybe you could hold it back until the end of the quiet movement or the end of the prayer, but then you just had to cough or clear your throat. This is something like what it feels like to have a tic, but with TS it is happening throughout the day, every day. Tics can be simple movements, such as throat clearing, eye blinking, or shoulder shrugging. Or, they can be very complex, such as touching the person next to you, walking backwards, or saying words or phrases. When people hear “Tourette” they sometimes think of involuntarily cursing, but in fact most people with TS do not have this type of tic.
In addition to tics, it is fairly common for people with TS to also have recurrent intrusive thoughts, impulsivity, or significant difficulty focusing on school or work.
Many people with tics lead a fairly normal life. TS does not shorten your life or cause you to lose your mind or anything of the sort. However, even people with relatively mild tics can find it a problem. I think of one man who has typical TS, but his symptoms were mild enough that his wife was not aware of his diagnosis until recently. He has a successful professional career and good family life, but he told me, “it is like I am on stage 16 hours a day. Every waking moment I am trying not to tic when people are watching.” Other people with TS have much more severe symptoms and occasionally the symptoms can be disabling.
What can be done about it?
Most people with TS can do fine with education about their tics, reassurance, and some instruction to their family, friends, or teachers to just not worry about it. When tics are more problematic, there are medicines and other treatments which can reduce the severity of tics. Symptoms which sometimes accompany TS, such as obsessions, compulsions, impulsivity, hyperactivity or inattentiveness, are also very treatable. Treatment of TS is an area of active research at many centers around the world, including at our own Movement Disorders Center (Washington University School of Medicine).
TS has been described either as a neurologic or a psychiatric disorder. These labels have nothing to do with the cause of TS, but simply relate to the fact that historically, neurologists and psychiatrists have been the main medical experts who have studied and treated TS. Both specialties are well represented on the medical and scientific advisory boards to the Tourette Syndrome Association.
Sources of additional information
The Tourette Syndrome Association is a valuable resource and there is an active local chapter. These and other reliable sources of further information about TS are listed on the following web page: www.tics-R.us