Tourette Syndrome - Tourette Syndrome Overview

Written by Robert Myers, PhD

Is TS inherited?

Evidence from genetic studies suggests that TS is inherited in a dominant mode and the gene(s) involved can cause a variable range of symptoms in different family members. A person with TS has about a 50-50 chance of passing on the gene(s) to one of his or her offspring. However, that genetic predisposition may not necessarily result in full-blown TS; instead, it may express itself as a milder tic disorder or as obsessive compulsive behaviors or possibly attention deficit disorder with few or no tics at all. It is also possible that the gene-carrying offspring will not develop any TS symptoms. A higher than normal incidence of milder tic disorders and obsessive compulsive behaviors has been found in families of individuals with TS.

Gender also plays an important role in TS gene expression. If the gene-carrying offspring of a TS patient is male, then the risk of developing symptoms is 3 to 4 times higher. However, most people who inherit the gene(s) will not develop symptoms severe enough to warrant medical attention. In some cases of TS, inheritance cannot be determined. These cases are called sporadic and their cause is unknown.

What is the prognosis?

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There is no cure for TS; however, the condition in many individuals improves as they mature. Individuals with TS can expect to live a normal life span. Although the disorder is generally lifelong and chronic, it is not a degenerative condition. TS does not impair intelligence. Tics tend to decrease with age, enabling some patients to discontinue using medication. In a few cases, complete remission occurs after adolescence. Although tic symptoms tend to decrease with age, it is possible that neuropsychiatric disorders such as depression, panic attacks, mood swings, and antisocial behaviors may increase.

What is the best educational setting for children with TS?

Although students with TS often function well in the regular classroom, it is estimated that many may have some kind of learning disability. When attention deficit disorder, obsessive compulsive disorder, and frequent tics greatly interfere with academic performance or social adjustment, students should be placed in an educational setting that meets their individual needs. These students may require tutoring, smaller or special classes, and in some cases special schools.

All students with TS need a tolerant and compassionate setting that both encourages them to work to their full potential and is flexible enough to accommodate their special needs. This setting may include a private study area, exams outside the regular classroom, or even oral exams when the child's symptoms interfere with his or her ability to write. Untimed testing reduces stress for students with TS.

What research is being done?

Within the Federal Government, the leading supporter of research on TS and other neurological disorders is the National Institute of Neurological Disorders and Stroke (NINDS). The NINDS, a part of the National Institutes of Health (NIH), is responsible for supporting and conducting research on the brain and central nervous system.

NINDS sponsors research on TS both in its laboratories at the NIH and through grants to major medical institutions across the country. The National Institute of Mental Health,the National Center for Research Resources, the National Institute of Child Health and Human Development, the National Institute on Drug Abuse, and the National Institute on Deafness and Other Communication Disorders also support research of relevance to TS.

Recent research has led to several notable advances in the understanding of TS. Already scientists have learned that TS is inherited from a dominant gene(s) that causes different symptoms from patient to patient, and that the disorder is more common than was previously thought.

Genetic studies. Currently, investigators are conducting genetic linkage studies in large multigenerational families affected with TS in an effort to find the chromosomal location of the TS gene(s). Finding a genetic marker (a biochemical abnormality that all TS patients might share) for TS would be a major step toward understanding the genetic risk factors for TS. Once the marker is found, research efforts would then focus on locating the TS gene(s).

Understanding the genetics of TS will directly benefit patients who are concerned about recurrence in their families and will ultimately help to clarify the development of the disorder. Localization of the TS gene will strengthen clinical diagnosis, improve genetic counseling, lead to the clarification of pathophysiology, and provide clues for more effective therapies.

Neurotransmitter studies. Investigators continue to study certain neurotransmitters to increase our understanding of the syndrome, explore the role they play in the disease process, and provide more effective therapies.

Environmental studies. Other research projects currently under way include analyzing young unaffected children at high risk for TS in order to identify environmental factors such as life stresses or exposure to certain medications that may influence the expression of the disorder.

Scientists are also conducting neuropsychological tests and neuroimaging studies of brain activity and structure to determine the extent to which specific environmental exposures may affect the emergence of tics and/or obsessive compulsive symptoms.

Tourette's, Other Tic Disorders Far More Common Than Once Thought One out of four students in special-education classes has a tic-related disorder like Tourette syndrome, and the rate of Tourette's among students in the general population is 50 to 75 times higher than has been traditionally thought by doctors, according to a study published in the Oct. 23 issue of the journal Neurology.

Where can I go for more information?

For more information about TS or other neurological disorders, or about the NINDS and its research programs, contact the NINDS Office of Scientific and Health Reports.

The Tourette Syndrome Association, Inc., is a voluntary, nonprofit organization whose members include people with TS, their families and friends, and health care professionals. The Association funds research, provides services to patients and their families, and offers a variety of publications, including a newsletter, brochures, and fact sheets. For further information, contact:

Tourette Syndrome Association, Inc.
42-40 Bell Boulevard
Bayside, New York 11361-2861
(718) 224-2999
(800) 237-0717

Books available from Amazon.com:

A Mind of Its Own : Tourette's Syndrome : A Story and a Guide

Ryan : A Mother's Story of Her Hyperactive/Tourette Syndrome Child

Prepared by
Office of Scientific and Health Reports
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892
NIH Publication No. 95-2163
Original Publication Date: February 1995

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