Tourettes: it is not what you think
LISA SALMON DISCOVERS THE TRUTH ABOUT THIS VERY MUCH MISUNDERSTOOD CONDITION
THERE are many misconceptions about how Tourettes affects people but the truth is, only a minority of sufferers swear involuntarily – the vast majority don’t.
Emma McNally, CEO of Tourettes Action (tourettes-action.org.uk) says: “Tourettes is still a very misunderstood condition. 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.
“At Tourettes Action, we believe that, with awareness, we will bring acceptance and ultimately stop the stigma associated with the condition.”
Here are seven things you may not know about Tourettes...
It’s rare to swear
Contrary to popular belief, a massive 90% of people with Tourettes don’t have coprolalia – the clinical term for involuntary swearing.
Emma says: “We’re hoping our awareness campaign #ThisIsTourettes #ItsNotWhatYouThink will help dispel lots of the myths surrounding Tourettes, and enable people to have social acceptance and live their lives to the full.”
Tics are the main problem
The main feature of Tourettes is tics, which are 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 to be diagnosed as
Tourettes.
Co-occurring conditions are very common
Up to 85% of people with Tourettes will also have conditions, including attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), autistic spectrum disorder (ASD), and/or anxiety.
Tourettes may be linked to infections
It’s thought infections may trigger Tourettes or make it worse, and Tourettes Action says it’s not unusual for people with the condition to report worse tics during an infection, particularly with the bacteria streptococcus, which often causes throat infections in children.
It runs in families
Although tics often run in families, Tourettes Action says there’s not a single gene that causes Tourettes, and research suggests many variations in genes together increase the risk of developing the condition.
It’s more common than you 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 Tourettes in the UK and Ireland.
There are treatments but no cure
Although incurable, there are treatments to help manage tics, including cognitive behavioural therapy, medication, and other approaches that aren’t yet backed up by science, such as diet, exercise, and complementary therapies.
Tourettes Action says neurosurgery called deep brain stimulation (DBS) is also being trialled for severe Tourettes cases, although it’s not yet clear whether this will become an available treatment option.