DEBUNKING THE MYTHS AROUND TOURETTE’S

Lisa Salmon finds involuntary swearing afflicts a small minority of sufferers – and up to 300,000 people across these islands are battling the social stigma of the condition

Tourette Syndrome is all about people involuntarily swearing or shouting inappropriate things, right? Wrong. Only a minority of people with Tourette’s swear involuntarily – the vast majority don’t do this. Emma McNally, CEO of Tourettes Action (tourettes-action.org.uk) says: “It’s one of the least known neuro conditions, with many people thinking it’s rare, and that swearing is a criteria for diagnosis – both of which are untrue. This misunderstanding often brings a stigma and makes people with the condition feel isolated.”

Here’s are nine things you may not know about Tourette’s…

IT’S RARE TO SWEAR

A massive 90% of people with Tourette’s don’t have coprolalia – the clinical term for involuntary swearing.

McNally says: “We’re hoping our awareness campaign #ThisIsTourettes #ItsNotWhatYouThink will help dispel lots of the myths and enable people to have social acceptance and live their lives to the full.”

TICS ARE MAJOR PROBLEM

The main feature of Tourette’s is tics – involuntary sounds and movements such as blinking, shrugging, whistling, limb and head jerking, or repeating a sound, word or phrase.

These usually start at around the age of six or seven, and Tourettes Action says they can occur in any part of the body and can even be internal.

Tics usually come and go and can be influenced by things like stress, excitement and relaxation. They must be experienced for at least a year for someone to be diagnosed with Tourette’s.

SOMETIMES TICS CAN BE SUPPRESSED

Many people with Tourette’s may be able to suppress their tics for a limited time, so a child might be able to suppress them at school, for example. However, this can be very tiring, so when a child comes home, they may be too tired to suppress their tics, or they may simply feel comfortable enough to let their tics show.

CO-OCCURRING CONDITIONS ARE VERY COMMON

Up to 85% of people with Tourette’s will have other conditions, including attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), autistic spectrum disorder (ASD), and/or anxiety.

“Tics are just one small piece of what people with Tourette’s deal with on a daily basis,” says McNally.

“There’s often so much more going on below the surface, such as pain and injury, insomnia, fatigue and often co-occurring conditions such as OCD, ADHD, ASD and anxiety.”

IT RUNS IN FAMILIES

Tourettes Action says there’s not a single gene that causes Tourette’s, and research suggests many variations in genes together increase the risk of developing the condition.

ALCOHOL AND CANNABIS USE IN PREGNANCY

It’s likely environmental factors can also affect the developing brain and interact with someone’s genetic make-up.

Studies suggest a pregnant mother using alcohol and cannabis, and inadequate maternal weight gain during pregnancy, could

be associated with the condition.

TOURETTE’S MAY BE LINKED TO INFECTIONS

TICS ARE JUST ONE SMALL PIECE OF WHAT PEOPLE WITH TOURETTE’S DEAL WITH ON A DAILY BASIS. THERE’S OFTEN SO MUCH MORE GOING ON BELOW THE SURFACE

Infections may trigger Tourette’s or make it worse and it’s not unusual for sufferers to report worse tics, particularly with the bacteria streptococcus, which often causes

throat infections in children.

IT’S MORE COMMON THAN YOU MIGHT THINK

Tourette Syndrome affects one school child in every 100 and is more common in boys. Tourettes Action says more than 300,000 children and adults are living with Tourette’s

in the UK and Ireland.

TREATMENTS BUT NO CURE

Although Tourette’s is incurable there are

treatments, including behavioural therapies like cognitive behavioural therapy, medication

and other approaches that aren’t yet backed up by science, such as diet, exercise and complementary therapies.

Neurosurgery called deep brain stimulation (DBS) is also being trialled for severe cases, although it’s not yet clear whether this will

become an available treatment option.

UNDER CONTROL: Suppressing tics is possible for some sufferers.

Emma McNally is CEO of Tourettes Action.