Dr Zakariya Waqar-Uddin: Facts about Tourette's Syndrome

Often public awareness and opinion about a condition is determined, or at least influenced by the volume and flavour of media coverage.

Monday, 31st May 2021, 9:35 am
Updated Monday, 31st May 2021, 9:36 am
Dr Zakariya Waqar-Uddin

Often public awareness and opinion about a condition is determined, or at least influenced by the volume and flavour of media coverage.

I include depictions in film within this, as visual presentations of an illness on stage and in cinema can be powerful and long lasting.

Sadly, many will associate Tourette’s Syndrome, first described in 1885 by the French physician Gilles de la Tourette, with involuntary swearing or coprolalia to use its medical name. Yet coprolalia affects only 10% or less of those with the condition.

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Tourette’s Syndrome (TS) is a neurological condition, rather than a psychiatric illness. It involves involuntary, (this being the vital word) motor and vocal tics. Motor tics are abnormal movements which can affect the whole body, though symptoms such as eye blinking, grimacing and repetitive nodding may be more apparent than subtle tics of the arms and legs.

Vocal tics encompass as mentioned above uncontrollable swearing, throat clearing, coughing, sniffing, yelling or the production of animal like sounds.

Other symptoms may include repeating the words and actions of others (echophenomena) and palilalia (repeating your own words).

Tics themselves are surprisingly common, with one in five children affected at some point. They also occur in adults, either chronically, or often acutely at times of significant physical or emotional stress.

However, for a diagnosis of Tourette’s to be made, the tics have to last for more than 12 months and commence before the age of 18.

Tourette’s syndrome is more prevalent than might be assumed, affecting an estimated one in 100 children, though numbers may be higher.

It affects boys four times more than girls, and is usually diagnosed between the ages of two and 14, with six being the commonest age at diagnosis.

As a neurological condition, it is caused by subtle changes in the brain, still not fully understood.

An imbalance in levels of one of the neurotransmitters (chemicals in the brain) dopamine, is thought to contribute. There is a genetic element and children of an affected individual are more likely to suffer it.

Other theories are those of excess stress on the mother during pregnancy, or a traumatic childbirth. Maternal infection with streptococcus is the latest idea to be looked into.

It would be safe to say that apart from the genetic component, our knowledge and understanding of other risk factors is limited at the present.

Although an individual may only be affected by Tourette’s syndrome, many have other diagnoses including Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD) and learning difficulties. Balanced against this, several with Tourette’s syndrome are high functioning, as adults occupying positions of significant responsibility in several fields.

While associated with anxiety and depression, a strong component of this may be the psychological distress caused by the condition. Children with Tourette’s syndrome are at high risk of being bullied.

The diagnosis of Tourette’s syndrome is made by a neurologist, who may have a subspecialist interest in the disease itself. It has been highlighted that resources for diagnosis and support are painfully lacking at the present.

A petition has been set up by the mother of a child with the condition (https://petition.parliament.uk/petitions/575370), the desire being to get to the 100,000 signatures required to provoke a Parliamentary debate.

Treatment is guided by the severity of symptoms. First line treatments include behavioural therapies, namely CBT and habit reversal training. Many with Tourette’s spend a huge amount of effort trying to suppress the tics, and it can leave them utterly exhausted. Some children are much better when occupied, and hobbies requiring a significant amount of concentration, such as dance, have been shown to help as well as improve the individual’s self-esteem.

There are no medications designed specifically for Tourette’s syndrome and doctors have traditionally relied on antipsychotics to dampen down the tics. However, these medications often have multiple side effects hence the move to those used in the management of migraine and epilepsy, such as topiramate.

Deep Brain Stimulation (DBS), a surgical procedure also employed in treating Parkinson’s Disease is reserved for very selected cases.

Despite there being no cure for Tourette’s, the outlook is good as the condition is not a neurodegenerative illness, so those affected do not lose their functioning power.

Many find that by adulthood symptoms have gone, or at least reduced by a significant level.

Tourette’s Awareness Month runs until June 15.

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