Tourette’s Syndrome: More Than Meets the Ears
That it causes involuntary swearing?
While this is true in some cases, there is so much more to the neurological condition than most people realize.
In fact,
uncontrollable swearing or yelling of socially unacceptable phrases —
known as coprolalia — only occurs in around 10 to 15 percent of
individuals with Tourette’s syndrome (TS).
Despite affecting relatively few people with TS, coprolalia is perceived as one of the main symptoms of the condition.
It is this misconception, among a number of others, that has fueled a stereotype of people with TS.
“The reality is
that Tourette’s is a complex condition that can be both physically and
socially disabling,” wrote Jessica Thom, co-founder of Touretteshero — a blog that aims to “celebrate the humor and creativity of Tourette’s” — in an article for The Guardian in 2012.
“The assumption
that it’s only about swearing makes it even harder for the 90 percent
of people who have it but who haven’t ever ticced an offensive word.”
Tourette’s: What Is It?
First described
by French neurologist Dr. Georges Gilles de la Tourette in 1885, TS is a
neurological disorder characterized by “tics,” which are sudden,
involuntary, and repetitive twitches, movements, or sounds.
There are two
types of tics that occur with TS: motor and vocal. Motor tics are
involuntary body movements, such as blinking, shrugging, or arm-jerking,
while vocal tics are involuntary sounds, such as humming, clearing the
throat, or shouting a word or phrase.
Simple vocal tics may include repetitive sniffing, grunting, or throat clearing.
“Complex tics”
are those that affect a wider range of muscle groups. Complex motor tics
may involve a combination of facial grimacing, a head twist, and a
shoulder shrug, for example, while complex vocal tics include words or
phrases.
Symptoms of TS most commonly arise in childhood, between the ages of 5-10 years. In the United States, it is estimated that 1 in every 360 children aged 6-17 years have received a TS diagnosis, and the condition is three to five times more common among boys than girls.
It is unclear
exactly what causes TS, though studies have suggested the condition
arises from abnormalities in the basal ganglia of the brain — a region
involved in movement coordination.
Researchers
have also indicated that TS may have a genetic cause; studies have found
that certain gene mutations — such as those in the SLITRK1 gene — are more common in people with TS.
Tics: Managed But Not Controlled
Another common misconception is that people with TS can control their tics if they try hard enough; this is not the case.
The National
Institute of Neurological Disorders and Stroke (NINDS) — part of the
National Institutes of Health (NIH) — note that while some individuals
with the disorder may be able to temporarily suppress their tics, many
often report experiencing a severe tension build-up when doing so, which
can cause involuntary tics to strike.
For the majority of patients with TS, tics do not interfere with day-to-day functioning, so no treatment is required.
However, for
others, tics may impair functioning, cause stress, or interfere with
school, work, or social life. In these cases, there are medications and
behavioral therapies that might help.
Medications for
TS include neuroleptics, such as haloperidol and pimozide. These drugs
will not completely eliminate tics — there is no cure for tics — but
they may help patients manage them.
Behavioral therapies for TS include cognitive behavioral intervention for tics (CBIT),
which involves using “competing responses” to control tics, as well as
learning to resist the urge to tic. Studies have shown that such therapy
is effective for tic management.
Is the media fueling TS stereotypes?
As mentioned
previously, uncontrollable swearing and yelling of rude phrases only
affects 10-15 percent of people with TS, so why is it perceived as a
primary symptom?
Dr. Mark Hallett, senior investigator at NINDS, told Medical News Today that it is because this symptom is “so dramatic.”
Imagine you are
sitting on a train. The person opposite you begins to swear or make
socially unacceptable remarks. Such actions are difficult to ignore, and
because they are perceived as being “out of the ordinary,” they grab
people’s attention.
Unfortunately,
relative to the more common motor tics that occur among people with TS,
it is the swearing tics that people are most likely to remember, and
that is partly why they are considered a key symptom.
Of course, the media industry has not helped break this misconception - some would say it has done quite the opposite.
The vast
majority of media portrayals of TS illustrate a person with
uncontrollable swearing, and often, this will be depicted in a comedic
form.
For example, an
episode of the animated American sitcom South Park involves a character
called Cartman faking having TS so he can get away with swearing.
While such portrayals are seen by many as “harmless fun,” for people with TS, these representations add fuel to the stigma fire.
“When my son
was first diagnosed with Tourette’s, the first thing I said was, ‘But he
doesn’t swear,’” Susan Breakie, a chapter leader for the Tourette
Syndrome Association of Delaware, told The Huffington Post last year. “That’s the way I had stigmatized it because of things that I had seen in movies or TV shows.”
Sadly, such a misconception is common. But how can it be broken?
The need for better TS education
Dr. Hallett
told MNT that in order to reduce the stigma associated with TS, the
public needs to be better educated about the condition.
This is a view held by health professionals and patients alike, which is why Tourette’s Awareness Month — which takes place May 15th to June 15th each year — was launched.
The campaign — led by the Tourette Association of America — aims to raise awareness of TS, increase education about the condition, and reduce stigma.
An online
survey conducted last year by the Tourette’s Action, King’s College
Hospital, and Great Ormond Street Hospital — all in the United Kingdom —
assessing people’s views about education surrounding TS and other tic
disorders, revealed that 61 percent of respondents felt they had not received sufficient information on TS from health professionals in the past.
Respondents
also highlighted the need to increase the knowledge and understanding of
TS among educational professionals, as well as the need to correct
misconceptions about the condition among the general public.
While it is
clear that much more work is required to achieve a better understanding
of a commonly misunderstood condition, Dr. Hallett told MNT he believes
progress is being made.
“At least when I
started neurology practice, it was an unknown disorder,” he said. “Now,
it is pretty well known, and patients (or patient’s parents) often make
their own diagnosis. On the other hand, persons may not understand the
nature of the disorder, but there is certainly more to learn, even by
the experts.”
The original article can be found on Medical News Today.
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