Busting the Myths — Tourettes Awareness
Beyond portrayals in movies and television programmes, there is little awareness around Tourette syndrome (TS), which affects one child in every 100. More than 300,000 children and adults in the UK are living with this neurological condition, with TS more prevalent in boys than girls.
TS is often misunderstood; portrayed as a condition with which people swear involuntary when, in fact, this part of the condition — called coprolalia — affects only 10% of people with TS. The cause of TS is still being learned, although research shows that there are some differences in certain areas of the brain, and the debate continues as to whether there is a link between streptococcus and Tourette Syndrome. Genetic factors can play a part, although there is not a specific identifiable gene, unlike with many other genetic diseases.
Tics are involuntary and can be distressing for the person with TS, although they will sometimes describe a feeling of relief when they tic. Many parents report that their child only seems to tic at home, this is because children may try to suppress their tics when out and about, only expressing them when they are tired or feeling comfortable enough to do so. If your child develops tics, it is not always an indicator of TS; in fact, tics are very common in children and most will grow out of them.
There are ways in which an individual can manage TS symptoms, including behavioural therapies, which will teach ways to change behaviours and alter the way they feel about tics. Medication can be prescribed for intense tics, and neurosurgery — in the form of Deep Brain Stimulation — is being trialled for use in very severe cases of TS, for which other therapies haven’t worked. Initial results from Deep Brain Stimulation are promising, but it hasn’t yet been clarified as to whether/when it will become available as a treatment option.
If you, or anyone you know, needs advice, guidance or support, Tourettes Action has a website with lots of resources, including presentations and downloads, to help you further understand TS and make sure you are receiving the right help.