Paying Attention To An Obscure Ailment
Published in the Courier News on October 1, 2000
For Jeremy Price, it started with the blinking.
He was just a 4-year-old then, a little boy like any other,
except that he blinked far more often than a 4-year-old should.
Jeremy's parents, Randy and Bonnie Price of Raritan Township,
took their son to an ophthalmologist, who found nothing wrong
with the boy.
Then Jeremy started exhibiting other odd physical tics.
His head would snap back suddenly, or his jaw would flex open,
or he would make strange sounds. No one could explain why.
Jeremy visited more doctors, and Mrs. Price says they told
her and her husband, "Don't worry, he'll grow out of it."
But people do not "grow out of" neurological disorders,
and within a year of first noticing Jeremy's symptoms, the
Prices got a proper diagnosis: Jeremy had Tourette syndrome.
Tourette syndrome is not fatal, not contagious and not usually
characterized by the one symptom with which most people are
familiar: the involuntary shouting of obscenities, called
coprolalia.
Tourette syndrome also is not widely understood by medical
professionals and the general public, but that may change
now that the Tourette Syndrome Association of New Jersey and
Rutgers University have joined to create a clinic that is
the first of its kind in the country.
The Rutgers-Tourette Syndrome Association of New Jersey Therapeutic
Program, which opened last month, offers individual and family
therapy, testing services, doctor referrals, social skills
development and workshops.
"It's a very big step forward for us," association President
Faith Rice says from the association's office in Somerville.
"It will have a great impact for families and others here
in the state."
Better understanding of the disorder, she says, will benefit
thousands of people who live their lives "trying to stay one
step ahead of their symptoms."
Jeremy considers himself one of the fortunate ones. Now a
13-year-old eighth-grader enrolled in academically talented
courses, he has been able to keep his symptoms in check by
taking daily medications. It is a stopgap treatment that may
or may not remain effective as Jeremy grows older, but in
terms of treatment, it is all the family has.
"Of course, every day I wish there was a cure," Mrs. Price
says.
"A magic wand," Jeremy adds. "That's what she says."
Unlike Ronald Reagan with Alzheimer's disease or Michael
J. Fox with Parkinson's disease, Tourette syndrome has no
celebrity face except former Major League Baseball player
Jim Eisenreich, whom Jeremy met several years ago.
"Sometimes I say, `Wouldn't it be cool if the president got
Tourette, or Bill Gates got Tourette?'‰" Jeremy says with
a laugh. "‰`I'll give you $5 billion to find a cure.' The
next day there would be a cure."
For now, no cure exists, but Rice says this could change
now that five Rutgers University graduate students every year
will dedicate their doctoral studies to better understanding
the disorder.
"It's very much underrepresented in medical texts and in
medical school," Rice says. "One of our responsibilities,
if you will, is to create a general awareness so that someone
with Tourette can go to the mall and not be picked on, beaten
up, whatever it is that happens. So they can sit in a restaurant
and people just say, `Oh, that's Tourette syndrome. No big
deal.'"
Rice says the nonprofit association operates on donations
and grants, which always are needed. To that end, it is puzzling
that none of the pharmaceutical companies that provide medications
for those with Tourette syndrome have not stepped up and contributed
to the cause, given the profits they've made from the people
who rely upon them.
Perhaps that will change now that the clinic has opened,
or so Rice hopes.
Until then, it will be up to doctors, teachers and parents
to cope with this disorder, which can be "excruciating," says
Rice, whose adult son has Tourette syndrome.
"I can't think of another word," she says. "Families go through
all kinds of stuff. It's very trying."
Mrs. Price adds: "In the very beginning, when we found out,
it was, `What did I do wrong?' When I was pregnant, I quit
caffeine, sugar, everything, but I still thought I did something
wrong. There was tremendous guilt. Was it parenting style?
Then we realized it was genetic. You think of family members.
`Well, it didn't come from my side of the family.' .‰.‰. It's
a hard process in the beginning."
But before long, the Price family, which includes Jeremy's
9-year-old sister, Samantha, accepted Jeremy's disorder and
dealt with it as best they could. This included explaining
the disorder to those unfamiliar with it.
"Whenever my friends come over, especially the first time,"
Samantha says, "I just say, `Jeremy has Tourette, and sometimes
he starts making noises. He can't help it. It's nothing. He
just does it.'‰"
This nonchalant attitude, however, is not always a common
one.
"Some people are not open about it," says Mrs. Price, a member
of the state association's Board of Directors. "They don't
want others to know. I think that's detrimental because it
gives a message to the child that it's something to be ashamed
of. We've never felt it nor have we expressed it to Jeremy
that way. It's something he has, that's all. .‰.‰. You can't
let it take you down. He's a great kid and he has this thing
and we'll deal with it and we'll go on."
Jeremy takes the same approach.
"It's a non-issue now," he says. "There was one person who
gave me a hard time when I was 9. I was on an all-star baseball
team and I was making these sounds, like `hut,' and he was
saying, `Do you have the hiccups?' And I said to him, `Watch
out. It's contagious.' It's not, of course, but he stopped
making fun of me after that."
Jeremy and his mom share a laugh.
"I've been pretty lucky," he says, still chuckling. "Some
people have it pretty bad, but I'm lucky."
Pasquale DiFulco's commentaries and stories about Central
Jerseyans appear Sundays, Wednesdays and Fridays.
Write to Courier News, P.O. Box 6600, Bridgewater, N.J. 08807.
Phone: (908) 707-3163.
E-mail: difulco@c-n.com
from the Courier News
Published on October 1, 2000
Web-published at this site with permission of Courier News
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