What is the Tourette Association of America?
TAA, founded in 1972, is the only national voluntary non-profit membership organization dedicated to:
Identifying the cause; finding the cure; and controlling the effects of TS.
Members include individuals with the disorder, their relatives and other interested, concerned people. The Association develops and disseminates educational material to individuals, professionals and to agencies in the fields of health care, education and government; coordinates support services to help people and their families cope with the problems that occur with TS; funds research that will ultimately find the cause of and cure for TS, and at the same time, lead to improved medications and treatments.
- Offers direct help to TS families in crisis situations through its Information and Referral Service
- Organizes workshops and symposiums for scientists, clinicians and others working in the field of TS
- Promotes public awareness and understanding
- Develops and maintains state-by-state lists of doctors who can diagnose and treat TS, as well as medical referrals in other countries; lists of allied professionals (psychologists, social workers) by state; ABA lists of pro-bono attorneys by state; advocate lists by state; and lists of health insurance resources by state.
- Sponsors the Tourette Syndrome Brain Bank Program involving collection of sorely needed tissue for scientific research
- Serves many thousands of members throughout the USA and abroad
- Increases the knowledge and sensitivity of health care professionals to TS through exhibits at conferences, the dissemination of literature and the organization of national meetings
- Organizes and assists local chapters and support groups throughout the US and around the world
- Represents the interests of members to the government on critical policy issues including orphan drugs, health insurance and employment
What type of services for families exist?
Local TAA affiliates and support groups allow families to exchange ideas and feelings about their common problems. Often family therapy is helpful. Parents of a child with TS have to walk a fine line between understanding and overprotection. They are constantly faced with deciding whether or not certain actions are the expression of TS or just poor behavior. Parents then must determine the appropriate response. For socially unacceptable behavior, a child should be encouraged to control what he/she can whenever possible, and try to substitute what is more socially acceptable. Parents are urged to give their children with TS the opportunity for as much independence as possible, while gently but firmly limiting attempts by some children to use their symptoms to control those around them.
What research is being done?
Since 1984, the TAA has directly funded important research investigations in a number of scientific areas relevant to TS. Recently, studies have intensified to understand how the disorder is transmitted from one generation to the next, and researchers are working toward locating the gene marker for TS. That focus has been enhanced by the efforts of a TAA- supported international group of scientists who have formed a unique network to share what they know about the genetics of TS and to systematically cooperate to unravel the unknown. Additional insights are being obtained from studies of large families (kindreds) with numerous members who have TS. At the same time, investigators continue to study specific groups of brain chemicals to better understand the syndrome and to identify new and improved medications.
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. Another component of the Department of Health and Human Services, the Centers for Disease Control and Prevention, funds professional education programs as well as TS research.
Knowledge about TS comes from studies across a number of medical and scientific disciplines, including genetics, neuroimaging, neuropathology, clinical trials (medication and non-medication), epidemiology, neurophysiology, neuroimmunology, and descriptive/diagnostic clinical science.
How many people in the U.S. have TS?
Since many people with TS have yet to be diagnosed, there are no absolute figures. The official estimate by the National Institutes of Health is that 200,000 Americans have full-blown TS. Some genetic studies suggest that the figure may be as high as one in two hundred if those with chronic multiple tics and/or transient childhood tics are included in the count.
What is the prognosis?
Although there is no cure for TS, the condition in many individuals improves in the late teens and early 20s. As a result, some may actually become symptom-free or no longer need medication for tic suppression. Although the disorder is generally lifelong and chronic, it is not a degenerative condition. Individuals with TS have a normal life expectancy. TS does not impair intelligence. Although tic symptoms tend to decrease with age, it is possible that neurobehavioral disorders such as depression, panic attacks, mood swings, and antisocial behaviors can persist and cause impairment in adult life.
Do students with TS have special educational needs?
While school children with TS as a group have the same IQ range as the population at large, many have special educational needs. Data shows that many may have some kind of learning problem. That condition, combined with attention deficits and the difficulty coping with frequent tics, often call for special educational assistance. The use of tape recorders, typewriters, or computers for reading and writing problems, un-timed exams (in a private room if vocal tics are a problem), and permission to leave the classroom when tics become overwhelming are often helpful. Some children need extra help such as access to tutoring in a resource room.
When difficulties in school cannot be resolved, an educational evaluation may be indicated. A resulting identification as "other health impaired" under federal law will entitle the student to an Individual Education Plan (IEP) which addresses specific educational problems in school. Such an approach can significantly reduce the learning difficulties that prevent the young person from performing at his/her potential. The child who cannot be adequately educated in a public school with special services geared to his/her individual needs may be best served by enrollment in a special school or home schooled.
Although students with TS often function well in the regular classroom, ADHD, learning disabilities, obsessive-compulsive symptoms, and frequent tics can greatly interfere with academic performance or social adjustment. After a comprehensive assessment, students should be placed in an educational setting that meets their individual needs. 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.
Is it important to treat Tourette Syndrome early?
Yes, especially in those instances when the symptoms are viewed by some people as bizarre, disruptive and frightening. It is also important to consider therapy when the child is concerned over her/his acceptance to peers. Sometimes TS symptoms provoke ridicule and rejection by peers, neighbors, teachers and even casual observers. Parents may be overwhelmed by the strangeness of their child's behavior. The child may be threatened, excluded from activities and prevented from enjoying normal interpersonal relationships.
These difficulties may become greater during adolescence -- an especially trying period for young people and even more so for a person coping with a neurological problem. To avoid psychological harm, early diagnosis and treatment are crucial. Moreover, in more serious cases, it is possible to control many of the symptoms with medication.
Is there a cure?
Is TS inherited?
Genetic studies indicate that TS is inherited as a dominant gene (or genes) causing different symptoms in different family members. A person with TS has about a 50% chance of passing the gene to one of his/her children with each separate pregnancy. However, that genetic predisposition may express itself as TS, as a milder tic disorder or as obsessive compulsive symptoms with no tics at all. It is known that a higher than normal incidence of milder tic disorders and obsessive compulsive behaviors occur in the families of TS patients.
The sex of the offspring also influences the expression of the gene. The chance that the gene-carrying child of a person with TS will have symptoms is at least three to four times higher for a son than for a daughter. In addition, at-risk males are more likely to have tics and at-risk females are more likely to have obsessive-compulsive symptoms. Yet only about 10% of the children who inherit the gene will have symptoms severe enough to ever require medical attention. In some cases TS may not be inherited, and cases such as these are ident
How is TS treated?
The majority of people with TS are not significantly disabled by their tics or behavioral symptoms and therefore do not require medication. However, there are medications available to help control the symptoms when they interfere with functioning. The drugs include haloperidol (Haldol), clonidine (Catapres), pimozide (Orap), risperidone (Risperdal), fluphenazine (Prolixin, Permitil), and clonazepam (Klonopin). Drugs such as methylphenidate (Ritalin) and related drugs, and dextroamphetamine (Dexedrine) that are prescribed for ADHD have been described as increasing tics; this is controversial. Recent studies have not found a correlation with the use of these medication and an increase in tics. For obsessive compulsive traits that interfere significantly with daily functioning, fluoxetine (Prozac), clomipramine (Anafranil), sertraline (Zoloft) and paroxetine (Paxil) may be prescribed.
Dosages which achieve maximum control of symptoms vary for each patient and must be gauged carefully by a doctor. The medicine is administered in small doses with gradual increases to the point where there is maximum alleviation of symptoms with minimal side effects. Some of the undesirable reactions to medications are weight gain, muscular rigidity, fatigue, motor restlessness and social withdrawal, most of which can be reduced with specific medications. Some side effects such as depression and cognitive impairment can be alleviated with dosage reduction or a change of medication.
Psychotherapy may also be helpful. Although psychological problems do not cause TS, such problems may result from TS. Psychotherapy can help the person with TS better cope with the disorder and deal with the secondary social and emotional problems that sometimes occur. More recently, specific behavioral treatments that include awareness training and competing response training, such as voluntarily moving in response to a premonitory urge, have shown effectiveness in small controlled trials.
The use of relaxation techniques and/or biofeedback may serve to alleviate stress reactions that cause tics to increase. Larger and more definitive NIH-funded studies are underway.
What are the first symptoms of TS?
The most common first symptom is a facial tic such as rapidly blinking eyes or twitches of the mouth. Involuntary sounds such as throat clearing and sniffing, or tics of the limbs may be initial signs. For a minority, the disorder begins abruptly with multiple symptoms of movements and sounds.
Are there associated disorders with TS?
Many with TS experience additional neurobehavioral problems including inattention; hyperactivity and impulsiveness or acting before thinking, (attention deficit hyperactivity disorder—ADHD); obsessive-compulsive symptoms such as intrusive thoughts/worries and repetitive behaviors; learning disabilities that may include reading and writing difficulties, problems with mathematics and perceptual problems. People with TS have also reported problems with depression or anxiety disorders, as well as other difficulties with living, that may or may not be directly related to TS. Sleep Disorders are fairly common among people with TS. These include difficulty getting to sleep, frequent awakenings or walking or talking in one's sleep.
Compulsions and Ritualistic Behaviors may also occur. This is when a person feels that something must be done over and over and/or in a certain way. Examples include touching an object with one hand after touching it with the other hand to "even things up" or repeatedly checking to see that the flame on the stove is turned off. Children sometimes beg their parents to repeat a sentence many times until it "sounds right." Repetitive copying and erasing of work in school can be quite disabling.
Given the range of potential complications, people with TS are best served by receiving medical care that provides a comprehensive treatment plan.
What are the symptoms of Tourette Syndrome?
Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other vision irregularities, facial grimacing, shoulder shrugging, and head or shoulder jerking. Simple vocalizations might include repetitive throat-clearing, sniffing, or grunting sounds. Complex tics are distinct, coordinated patterns of movements involving several muscle groups. Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug. Other complex motor tics may actually appear purposeful, including sniffing or touching objects, hopping, jumping, bending, or twisting. Simple vocal tics may include throat-clearing, sniffing/snorting, grunting, or barking. More complex vocal tics include words or phrases.
Perhaps the most dramatic and disabling tics include motor movements that result in self-harm such as punching oneself or vocal tics including coprolalia (uttering swear words) or echolalia (repeating the words or phrases of others). Some tics are preceded by an urge or sensation in the affected muscle group, commonly called a premonitory urge. Some with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge or decrease the sensation. Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics, for example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished.