My name is Lucas May and I started www.tourettesyndrome.eu to offer as much support to those who are struggling or parents who need guidance. As a sufferer myself I like to think I can offer first hand advice and experience to anyone enquiring about the condition. Below are some quick FAQ for you to have a read.

What is Tourette Syndrome?

Tourette Syndrome is an inherited, neurological disorder characterized by repeated and involuntary body movements (tics) and uncontrollable vocal sounds. In a minority of cases, the vocalizations can include socially inappropriate words and phrases — calledcoprolalia. These outbursts are neither intentional nor purposeful. Involuntary symptoms can included eye blinking, repeated throat clearing or sniffing, arm thrusting, kicking movements, shoulder shrugging or jumping.

These and other symptoms typically appear before the age of 18 and the condition occurs in all ethnic groups with males affected 3 to 4 times more often than females. Although the symptoms of TS vary from person to person and range from very mild to severe, the majority of cases fall into the mild category. Associated conditions can include obsessivity, attentional problems and impulsiveness.

Most people with TS lead productive lives and participate in all professions. Increased public understanding and tolerance of TS symptoms are of paramount importance to people with Tourette Syndrome.

-Mary M. Robertson and Jeremy S. Stern, “The Gilles de la Tourette Syndrome,” Critical Reviews in Neurobiology, 11(1):1-19 (1997).

What are the kinds of tics?

A tic is usually defined as sudden and uncontrollable body movement (motor tic ) or utterance ( vocal tic ). However, not all tics are sudden; some are slow, with an almost dance-like, seemingly choreographed, motion (e.g., choreic tics). In Tourettes, most tics are more sudden. A tonic tic is marked by prolonged muscular contraction; a clonic tic is marked by a series of repeated contractions and relaxations.

Touretic tics may be simple tics which consist of a single movement – an eye blink, a head shrug (e.g., the “hair out of the eyes tic” which is extremely common in GTS), a knee jerk, a snuffling or sniffing sound, throat clearring, snorting, coughing. While they are involuntary 1/3 to 2/3 of touretters experience premonitory urges: they are aware that the tic is coming but can do nothing about it, and can delay it, but for only a short time. These can be compared to a sneeze or the urge to go to the bathroom. A complex tic is a series of simple tics or movements which are repeated as a set, or a seemingly purposeful motion, like hitting, pinching, poking, smelling, saying recognizable words or phrases.

The complex vocal tics are the most well known facet of tourettes. But only a small percentage of touretters – probably fewer than 25% – every experience them. The most commong occurances include suddenly saying or repeating words or phrases completely out of context. They need not be unusual or unacceptable. Echolalia is the repeating of words or phrases, such as “jingles” in a commerical, can occur anywhere from seconds to months to years later. (Consider the character in the movie Forget Paris who keeps repeating the Toyota jingle and reading street signs as they pass). Palilalia is the repeating of ones own words and phrases. Corprolalia is the uttering of socially inappropriate words or phrases.

Tics can be anywhere from very mild to very severe in GTS. They tend to wax and wane during the course of a touretter’s life. They may encompass whole body – almost convulsive movements at times – and then seemining disappear for days, weeks, or months. It is not uncommon for tics to increase in severence during the teenage years and then almost disappear in the early twenties after the throes of puberty have been passed. However, the tics rarely disappear completely permanantly.

For a clincial diagnosis of GTS, one must have both motor and vocal tics nearly daily for year before reaching age 21. If only motor or only vocal tics are present, or they are not present for a full year, or they occur first after age 21, the diagnosis is more likely to be chronic motor (vocal) tic syndrome (CMTS, CVTS). It is generally believed that CMTS and CVTS are just milder forms of a more general form of tourettes. The treatment is identical.

-Mary M. Robertson and Jeremy S. Stern, “The Gilles de la Tourette Syndrome,” Critical Reviews in Neurobiology, 11(1):1-19 (1997).

Is it genetic?

The inheritance pattern of Tourette syndrome is unclear. Although the features of this condition can cluster in families, many genetic and environmental factors are likely to be involved. Among family members of an affected person, it is difficult to predict who else may be at risk of developing the condition.

Treatment

Early diagnosis and treatment are essential. The diagnosis is confirmed by observing the pattern of symptoms and, although there’s no cure as yet, Tourette syndrome can be treated.

Most people with TS don’t need medication, but for those whose symptoms are interfering with their daily life, medication can be used to keep symptoms under control.

For many, psychotherapy or behavioural therapy can be helpful, as can relaxation therapy.