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Many people have become more aware of Tourette’s syndrome due to its appearance in the various types of media, nonetheless it would be false to state that this has led to the general public becoming more educated on the condition. Tourette’s syndrome has been portrayed in film, television shows, stand-up comedy, and even video games, however instead of carrying out research and providing an accurate illustration of the disorder, the media often uses Tourette’s syndrome as a laugh factor, creating characters who swear uncontrollably and have trouble keeping their inappropriate thoughts to themselves. Coprolalia, the correct term for involuntarily muttering obscenities, can be a component of Tourette’s syndrome, but what the media neglects to tell you is that it only occurs in 10-15% of patients suffering with TS. In this article, we will explore what is happening to the 85% of Tourette’s sufferers that TV doesn’t tell you about.
Tourette’s syndrome is an inherited neuropsychiatric disorder, characterised by motor and phonic tics, uncontrollable and involuntary movements and sounds. Named after the pioneering French neurologist, Dr Georges Gilles de la Tourette, it was once considered to be a rare and strange disorder, however Tourette’s syndrome is more common than people may first think. It is hard to know exactly how many people are living with Tourette’s syndrome, as many people who have mild TS do not suffer to the extent that the disorder has a significant impact on their daily life, and therefore do not seek diagnosis and treatment. It is thought, however, that over 300,000 people suffer from Tourette’s syndrome in the UK alone, and it is apparent that the disorder is 3 times more common in males than it is females.
Tourette’s syndrome seems to have some sort of genetic link, and it is common for sufferers of TS to have relatives in their wider family that also suffer from the disorder. Typically starting in childhood, the UK average age for diagnosis of TS is seven years, and symptoms are at their worst between 10-12 years. Up to 3.8% of children suffer from TS, although only half of these cases will progress into adulthood. The rest will experience a reduction or even complete loss of symptoms by the end of their teenage years.
The hallmark of Tourette’s syndrome are tics, which are characterised as sudden, uncontrollable, non-rhythmic movements (motor tics) or sounds (phonic tics). Tics can be classified as either simple or complex. Simple motor tics include facial grimacing and eye blinking, while complex motor tics are coordinated, patterned movements, such as sniffing or touching objects. Simple phonic tics include things like throat clearing and sniffing, while complex phonic tics include uttering words or phrases out of context. No two people suffering from Tourette’s syndrome will have the same pattern of tics, and even within the same individual, tics will vary in many ways. Tics will sometimes involuntarily get better or worse, known as waxing and waning; one tic may stop while another begins; certain tics may be made worse by anxiety or stress; and the severity of some or all tics may be reduced when concentrating on a specific task or with relaxation techniques.
Preceding a tic, most individuals feel an urge or impulse. Similar to having an itch, or needing to sneeze, these feelings, termed premonitory urges, only temporarily disappear when the individual carries out the specific tic. For short periods of time, it is possible for people with Tourette’s syndrome to supress their tics. Imagine resisting the urge to scratch an itch. The longer you go without scratching, the harder it becomes to ignore it, and when you finally scratch, you feel a sense of relief. This is the exact process individuals with TS go through every few seconds. Although supressing tics is possible, it often results in physical and mental exhaustion, and when finally in a place where they feel comfortable to tic, the tics that have been being supressed may be louder or more violent than they would have been if they had been carried out when the urge first pronounced itself.
The exact cause of Tourette’s syndrome is still unknown, although it is clear that there are genetic factors involved. The disorder is known to be hereditary, and it is estimated that a person with TS has a 50% chance of passing the gene onto their children, however as of yet no single gene has yet been identified. Even if a parent passes on their Tourette’s syndrome to their child, their child’s case of TS may be completely different to that of their parents. A parent may suffer from childhood Tourette’s syndrome that completely disappears by the age of 18, but their child may suffer from a more pronounced form of Tourette’s that lasts a lifetime. Abnormalities in the basal ganglia of the brain are thought to be a major cause of TS. The basal ganglia are a group of specialised cells that are responsible for regulating the body’s movements. In people with Tourette’s syndrome it is thought that tics are the result of a problem in the basal ganglia, which disrupts the ‘decision making process’, and creates the need to carry out an unwanted and unexplained movement or sound. It is also theorised that an imbalance in the brains neurotransmitters (chemical messengers), specifically serotonin and dopamine, results in tics.
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There is currently no cure for Tourette’s syndrome, and research into medical treatment and its effectiveness is difficult due to the constant fluctuation of symptoms over time. If symptoms become severe enough to interfere with daily life, there are treatment options available. Some treatment plans are effective enough without the use of medication, such as habit reversal therapy. This type of therapy involves the person being trained to become more aware of their tics, and the urges that happen before them. They are taught to find a competing response, and channel the premonitory urge into a more favourable, and maybe less noticeable movement. For example, instead of carrying out a tic that involves kicking their leg out, the person can train themselves to relieve the need to tic by crossing their legs instead. This type of therapy obviously requires a lot of time, effort and willpower, but once people understand the principle of the therapy, it can be a very effective method of treatment.
For some people, the symptoms of Tourette’s syndrome become so bad that they start to interfere with daily life. In this case, medication can be used to alleviate certain symptoms and improve their quality of life. There are a number of different medications that can be used to treat TS, and the individual will usually need to try out a number of different ones before they find the one that is most effective for them. Neuroleptics, such as Pimozide, have been widely used throughout Europe in the treatment of TS, with positive results. They work by blocking dopamine receptors in the brain, however can interfere with other signalling pathways, causing some unpleasant side effects such as sudden stiffness and shaking. Atypical antipsychotics, such as Aripiprazole, have also been found to be effective in the treatment of some cases of TS. These drugs are also dopamine signal blockers, but they are more selective than neuroleptics, and are also thought to affect serotonin. A commonly used drug that does not fit into either of these categories, is Tetrabenazine. Primarily used in the treatment of Huntington’s disease, Tetrabenazine reduces the amount of dopamine signalling in the brain, and has been effective in treating many cases of Tourette’s syndrome.
Raising awareness of the realities of Tourette’s syndrome is not only important from a research point of view, but also for the emotional wellbeing of every person suffering from it. If the media portrayed TS accurately, rather than using it to get a few laughs from the audience, maybe those with Tourette’s wouldn’t be so hesitant to admit to having it.