Honor Whiteman
What do you know about Tourette's Syndrome? 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.
Tourette's Syndrome (TS) first described by French neurologist Dr. Georges Gilles de la Tourette
in 1885, is a neurological disorder characterized by "tics," which are sudden, involuntary, and repetitive
twitches, movements, or sounds. However, uncontrollable swearing or yelling
of socially unacceptable phrases - known as coprolalia - occurs in around 10-15 percent of individuals
with Tourette's syndrome (TS).
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.
However, 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."
Fast
facts about TS
- Around 200,000 people in the U.S. have the most severe form of TS
- The worst symptoms of TS normally occur in early teens
- A person must have both motor and vocal tics for at least 1 year before receiving a TS diagnosis.
Learn more about TS
The majority of people with TS have what are called "simple
tics." In the motor form, these are defined as brief, repetitive movements
that involve fewer muscle groups. Examples of simple motor tics include eye
blinking, facial grimacing, and head or shoulder jerking.
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 3 to 5 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."
Some individuals believe the way the media portrays people with Tourette's
contributes to the stigma associated with the condition.
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 (2015). "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% 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. 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."
Dr. Mark Hallett
Source:
http://www.medicalnewstoday.com, Published:
Wednesday 18 May 2016
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