In 1825, a Doctor named Itard documented the first case of TS in medical papers. It was the description of the Marquise de Dompierre’s case, a lady from a noble family. She showed symptoms such as uncontrolled movements in various body parts and involuntary speech, including echolalia and coprolalia. The marquise lived to be 86 years old. Her case was described again in 1883 by Dr. Georges Gilles de la Tourette, a French neurologist. The name of this syndrome was named in his honour. Dr. Samuel Johnson, a lexicographer, Wolfgang Amadeus Mozart, famous composer and Billie Eilish Pirate Baird O'Connel, American singer and songwriter, are people that have (or probably had) TS.

Most people with TS do not need medication, because their tics or other associated symptoms do not cause serious incapacities. However, there is medication that help decrease the symptoms if they hinder daily life. Here are some of the most prescribed drugs: haloperidol (Haldol ®), pimozide (Orap ®), clonidine (Catapres ®), clonazepam (Rivotril ®) and nitrazepam (Mogadon ®). Stimulant drugs, such as methylphenidate (Ritalin ®) and dexamphetamine (Dexedrine ®), prescribed to treat hyperactivity, may cause a temporary increase in the number of tics and must be used with care. We may manage the obsessive-compulsive symptoms using fluoxetine (Prozac ®), clomipramine (Anafranil ®) or other similar medication.

The required dosage to adequately treat the symptoms vary from one patient to another. That is why it needs to be well-adjusted by the doctor. In general, we begin with small doses, and we increase gradually until the symptoms are neutralized without serious side effects. Some of those side effects may include fatigue, motor restlessness, weight gain and self withdrawal. We can usually manage them with the appropriate medication. In the case of depression or cognitive impairment, it may also be necessary to decrease the dosage or change medication altogether.

There are also other types of therapies that can help people living with TS. Psychotherapy can help the person and the family to deal with psychosocial issues associated with TS. The behavioural therapies may help replace some tics by others less disabling. Finally, relaxation techniques and biofeedback may also be useful during intense stress periods.

Some patients will enjoy a complete remission or an important improvement when they reach adulthood and will keep getting better and better after that. TS does not impact life expectancy.

It becomes important to treat TS when the symptoms impact the person’s daily life or provoke discomfort around them. Such symptoms may result in the person being mocked or rejected by comrades, neighbours, teachers and even strangers. Parents can become overwhelmed by the strange behaviour of their child. The child may then be threatened, excluded from family activities or just isolated from normal social interaction. Those difficulties may escalate during teenage years, a period that is already difficult for all young people but can become even more so when the teenager has to deal with this neurological disorder. To avoid psychological trauma, an early diagnostic and treatment is in order.

Is there a cure to TS?

No, there is no cure to TS.

What is the main cause of TS?

The exact origin of the symptoms is not yet known. According to recent research, a metabolic disorder linked to a brain chemical (a neurotransmitter) called ‘’dopamine’’ could be the cause. It is also possible that other neurotransmitters, such as serotonin, are involved.

Simple facial tics such as blinking or mouth contortion are the most common tics to appear first. However, involuntary sounds such as sniffing or throat clearing, or mannerism are also among the first tics to appear. Sometimes, this syndrome will appear suddenly, with multiple symptoms including movements and sounds.

Recently, research has been intensified to understand how TS is transmitted from generation to generation. We are trying to localize the gene responsible for TS. An international group of scientists is making progress by establishing a unique network of knowledge on the genetics of TS. Studies on large families with many members living with TS should help us better understand this syndrome. At the same time, researchers continue to study specific groupings of brain chemical elements to better understand TS and develop more effective medication. There is also an effort to establish sub-34rew4dftgeegnb groupings of people with TS.

The first tics, usually motor tics, appear around age 6, but they can also be noticeable as early as 6 months old. It often happens that tics will appear following an important triggering event, such as the death of a relative, a new baby in the family, a conflictual situation at home or a specific stress. The start of school, as soon as kindergarten, can be an event stressful enough to trigger the tics.

The symptoms will usually worsen or complexify (appearance of complex tics) during teenage years, around age 11 to 13, but tend to decrease in early adulthood. Symptoms may vary in frequency and intensity. Periods of calm will follow more active periods of the syndrome.

At the end of the teenage years, between 8 to 30% of patients (according to research) will seek periods of complete remission and another 30% will see an important decrease in the symptoms. When reaching adulthood, the person with TS will learn how to better control his or her environment and will know how to modify his or her tics so they become more socially acceptable and less obvious.

The adult with TS must learn to face reality in the work environment and in relationships. The search for job can be hard knowing that certain symptoms, such as tics, may be wrongly interpreted by a potential employer. Learning disabilities, OCD, and impulsive reactions to figures of authority may all hinder the adaptation in a work environment.

A better self-acceptance and a good communication with relatives and friends are among the most essential factors to a good quality of life for an adult with TS.

Because TS is a complex disorder with multiple aspects, for which symptoms vary between nonexistent to highly disabling, the parents who receive a diagnostic of TS for their child are often overwhelmed. They asked themselves ‘’if my kid does this or that, will he/she then do this or that? How do we know if behaviour x is the TS (involuntary) or just my child acting up (voluntary)?

We cannot stress enough the fact that each case is unique. The only certainty we have is that this syndrome will usually worsen under stress, that the tics will vary with time and that they will worsen or get better in a cyclical fashion.

Because a lot of people has not yet received a diagnostic, there is no official statistics. The most recent genetic studies tend to suggest that one out of every 200 people may be affected, including those with chronic tics and transitory tics.

It’s by observing the symptoms and analysing their evolution that we can establish a diagnostic. There is no blood analysis or x-ray or any other medical tests that can identify the presence of TS. However, a doctor may request an EEG, an Axial Tomography or other analysis.

It is sometimes the case. However, most patients have benign symptoms. Also, an increasing number of people with moderate to severe symptoms can excel in areas such as medicine, engineering, law, journalism, sports and computer science. Many people with TS will study at the college level either in a technical area or in preparation for university.

Genetic research tends to indicate that tics and TS are transmitted through a dominant gene that may result in different symptoms for various members of the same family. A person with TS has about 50% chances to transmit the gene to one or more of his or her children. Depending on the people, this gene may take the form of TS, minor tics or OCD without tics. It is common to observe, within families where many members live with TS, a higher rate than normal of minor tics and symptoms of obsession and compulsion.

The Association has sections and representatives everywhere in the province of Québec to help families. Support groups exist for people with TS, families and stakeholders. Meetings allow participants to exchange ideas and impressions regarding their common issues.

[Note de la traduction – la réponse à cette question devrait être exactement la même que dans la section «SGT». Je n’ai pas traduit et je suggère que le français soit remplacé.]

Some children have learning disabilities and, coupled with ADHD and other difficulties linked to their tics, will require special education support. We may consider some of the following solutions: using a recorder or computer /tablet for reading and writing difficulties, exams without time limits (in an isolated room if vocal tics are a problem) and permission to leave the classroom when the tics are too intense. Some children also need special support such as individual tutoring.
When difficulties at school cannot be resolved, a remedial education services evaluation is required. Every child to whom we recognize the need for a special program (plan of intervention) has the right to the elaboration and implementation of such a plan.