Who Gets Tourette's? Genes and Other Causes What Are the ...

ustin started having tics
(sudden movements,
twitches, or vocal sounds)
when he was about
5 years old. He would
blink his eyes or shake his head.
Sometimes he made unusual
noises. Sometimes he would touch
the same object over and over.
Justin also began to have trouble
sleeping and paying attention
in school. His doctors found that
he had Tourette’s syndrome (TS)
when he was 7. He also had
obsessive-compulsive disorder
(OCD), and attention
deficit hyperactivity
disorder (ADHD).
OCD and ADHD are
not a part of Tourette’s,
but people who have TS
often have them too.
People with OCD feel they must
do certain things. They might
count all the letters in a book or
clean the same spot over and
over again. People with ADHD
have trouble focusing on a task.
They may have wild bursts
of activity.
Twitching, shouting, and repeating
the same behavior over and over
are just a few of the symptoms
of this disorder of the
nervous system.
by Melissa Abramovitz
What Are the
Symptoms?
TS is a disorder of the
nervous system. It involves a
variety of voice and movement
tics. Different people
with the disorder may have
different symptoms. These
change over time and can
affect any muscle group in the
body. People with TS may jerk
their head or flail their arms.
They may clear their throat
repeatedly, sniff objects, grunt,
or bark. A very small number
may even curse.
Being anxious, stressed, or
tired can make the tics worse.
Often exercise, sleep, and concentrating
on a task can reduce
the number of tics. In any case,
it’s important to know that the
person cannot control them.
Sometimes the individual
can hold back the tic, but only
for a while. The pressure will
build up. Then the tic will have
to be released. “The impulse to
twitch is stronger
than 300 mosquito
bites in want of
a scratch,” Jason
explains. He
developed TS in
the fourth grade.
Who Gets
Tourette’s?
TS usually begins in
childhood. Symptoms may be
mild or severe. Sometimes TS
goes away on its own as the
child grows older. But some
cases get worse over time.
TS affects people of all races
and ethnic groups. But males
get it three or four times as
often as females. TS tends to
run in families. A parent with
the gene can pass it on to his or
her children.
The National Institutes of
Health estimates that about
100,000 Americans have TS.
Sadly, there are many more
people with TS who don’t
know what is wrong with them.
Also, many doctors do not
recognize the signs of TS.
Genes and Other
Causes
Scientists have not yet discovered
which gene is responsible
for TS. And there may be
more than one involved. But
they do know that the gene
somehow disrupts certain brain
chemicals. These chemicals are
called neurotransmitters (nur-oh-
TRANZ-mitt-erz). They carry
signals from one nerve cell to
another. People with TS have too
much of the neurotransmitter
dopamine (DOPE-uh-meen) in
certain areas of their brains. The
excess dopamine may be the
cause of many of their symptoms.
Researchers also believe
other brain chemicals are
involved. Other factors may also
play a role in TS.
Treating Tourette’s
Doctors can prescribe medicines
that will help people
with TS. But patients have a
wide range of symptoms. That
means that no one drug will
help in all cases. Unfortunately,
no drug completely stops the
symptoms.
The drugs can have severe
side effects—effects that aren’t
wanted. Patients may feel
drowsy or gain weight. They
may have headaches, or their
muscles may go rigid. To help
avoid side effects, doctors prescribe
very low doses whenever
possible. And most doctors recommend
that patients not take
any drugs at all if their tics
don’t interfere too much with
their lives.
A few TS patients use nicotine
patches to help control their
tics. (People usually use the
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patches to help them quit smoking
cigarettes.) The patches
allow the patients to take lower
doses of their other medications.
Unfortunately, some people
have side effects from the nicotine
patches.
Some patients are helped by
behavior therapy. They receive
rewards for concentrating or
controlling some of their tics.
How You Can
Help Someone
with TS
• Understand that the tics,
twitches, and strange sounds are
not done on purpose.
• Never imitate or make fun of
someone’s tics. It is hurtful to him
or her—just as it would be to you.
• Many people with Tourette’s will
tell their friends and classmates
about the disorder. Others feel
embarrassed about doing so.
It’s best not to pressure some-
one who would rather not talk
about TS.
• Understand that people with
TS are as smart, athletic, and
talented as anyone else.
Living with Tourette’s
People with TS agree that
the social effects of the disorder
can be worse than the physical
ones. Children often find that
others make fun of their tics.
This makes them feel stupid
and unwanted. Jason’s classmates
imitated his throat and
arm-stretching tics. He remembers,
“I felt humiliated. Even
though I was a good student, I
felt like I was retarded.” That’s
why TS patients and their families
often seek out support
groups to find out how to cope.
Support groups also provide
information to teachers
and school officials. The information
helps them understand
a child’s special needs. Susan,
for example, had trouble reading.
Her tic caused her eyes to
move back and forth. When her
teacher understood the problem,
she was able to give Susan
extra help. Other kids with TS
may be allowed to take breaks
from the classroom. This allows
them to express their tics in private.
These small changes can
make a big difference in these
children’s lives.
Educating the Public
In addition, famous people
help educate the public. They
also inspire others with TS
to lead happy, productive lives
in spite of their symptoms.
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Michael Wolff of the Tourette
Syndrome Association, for
example, is a jazz pianist. He
was deeply embarrassed by his
tics. Then his wife, actress Polly
Draper, convinced him to help
others by speaking out about
TS. He also wrote the music for
the film The Tic Code, which
received rave reviews.
Professional athletes who
have TS also speak out. They
encourage others to achieve
their dreams in spite of TS.
Pro baseball outfielder Jim
Eisenreich has had Tourette’s
since the age of 6. But he wasn’t
diagnosed until he was 23. He
had to put his career on hold
while his doctors found the
right combination of drugs to
control his tics. Then he was
able to get back to being a topnotch
player. Now he enjoys
visiting with young people
who have TS. He lets them
know they can succeed too.
Other pro athletes with TS
include NBA star Mahmoud
Abdul-Rauf (formerly Chris
Jackson), baseball player
Charles Johnson, and soccer
goalie Tim Howard.
Anyone can have TS. There
are doctors, lawyers, teachers,
actors, nurses, and many others
in all walks of life who have TS.
Most people with TS lead normal,
productive lives. And
many are very successful. ❏