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Inflamed joints, disrupted lives: Early diagnosis is key to
fighting juvenile rheumatoid arthritis
Watching their daughter, Jessica, ride her bike is a
pleasure that Alyce and John Drews didn't think they would
ever enjoy.
by Laura Ortiz, Detroit Free Press, September 24, 2002
For more articles on disabilities and special ed visit
www.bridges4kids.org.
What is JRA?
Juvenile rheumatoid arthritis is an autoimmune disorder that,
for reasons unknown to scientists, causes harmful foreign
substances like bacteria or viruses to attack healthy cells.
It can strike anytime between birth and 17 years of age and is
not hereditary.
The good news is that children with JRA tend to outgrow it. If
diagnosed and treated early -- before there has been damage to
the joints or organs -- those affected won't have any
significant joint problems later in life.
Later diagnosis, on the other hand, can be crippling.
Symptoms are unpredictable and include joint swelling,
stiffness when awakening, reluctance to use a limb and reduced
activity. Depending on the type, JRA also can be signaled by
high fever (103 degrees or higher) and a rash of pale red
spots on the chest, thighs and sometimes other parts of the
body.
JRA comes in three forms:
Polyarticular Onset JRA affects five or more joints, usually
in the fingers and hands, but also can affect weight-bearing
joints like knees, ankles, the neck and jaw. Typically,
polyarticular onset JRA attacks the same joint on both sides
of the body. Girls are more prone to this type than boys.
Pauciarticular Onset JRA affects four or fewer joints, usually
the large ones like knees, ankles and elbows and usually only
on one side of the body. This type also puts patients at
higher risk of chronic eye inflammation.
Systemic Onset JRA affects both joints and organs, including
the heart, lungs, liver and spleen. In rare cases, it can
cause organ failure, infection and even death.
For much of her young life, the 10-year-old has had limited
mobility, making it difficult to perform even simple tasks
like climbing in and out of bed or walking to class.
"She was about 5 years old when we noticed that she wasn't
able to move quite right," says her mother. "She had no
interest in playing sports or doing gymnastics or anything
else physical."
When a pediatrician dismissed the notion that anything was
wrong, even after a lump appeared on the joint of a middle
finger, the Clarkston family tried to stop worrying.
Yet during the next several years, Jessica's condition got
progressively worse.
But that was then.
Last year, at the insistence of a friend, Alyce Drews took her
daughter to see a rheumatologist, who immediately diagnosed
her with juvenile rheumatoid arthritis, a sometimes crippling
condition that causes inflammation in the joints.
Jessica Drews is among nearly 300,000 U.S. children 17 and
younger -- 6,000 of them in Michigan -- who have some form of
arthritis. JRA is the most common.
JRA is diagnosed upon seeing the presence of active arthritis
(joint inflammation) and after other conditions with similar
symptoms like infections, malignancies and musculoskeletal
diseases have been ruled out. It can affect one joint or many
and, in rare cases, internal organs.
Although JRA shares part of its name with an adult version of
the condition, they are two different things.
Adult rheumatoid arthritis lasts a lifetime, says Dr. Barbara
S. Adams, director of pediatric rheumatology at the University
of Michigan C.S. Mott Children's Hospital in Ann Arbor.
Children with JRA outgrow their disease.
Adult rheumatoid arthritis eats away at the joints, while JRA
causes inflammation of the joints but does not damage the
spaces between them or the joint surfaces, says Adams, who is
also a clinical associate professor at the University of
Michigan.
"JRA isn't a lifetime disease, and it doesn't have to be
crippling," she says. "With prompt diagnosis and aggressive
therapy, these kids can develop normally."
Lucky girl
That's been the case for Ann Patterson, 2, whose symptoms
disappeared two weeks after being diagnosed with JRA.
"In January of this year, she woke up limping," says Ann's
mother, Lorraine Patterson, of Warren. "By the following week,
it was progressively worse."
When Lorraine and her husband, Andrew, saw that their daughter
was struggling to climb into bed, they took her to a
pediatrician who quickly diagnosed the condition and started
her on medication that included an anti-inflammatory drug and
methotrexate.
"She's gone two months without inflammation," Lorraine
Patterson says.
"She's back to gymnastics and swimming. She's nonstop running
and playing."
Still, the toddler will continue to take medication for the
next year. She'll also need eye exams every three months
because she's at high risk for eye inflammation, which can
lead to blindness.
Drugs and sometimes surgery
The first line of defense against JRA is nonsteroidal
anti-inflammatory drugs like Vioxx and Naperson. Among the
many other medications used is methotrexate, a low-dose
chemotherapy that comes in both liquid and pill form. It is
intended to improve the long-term outcome. Complementary
treatments include exercise, physical therapy and splints.
The Arthritis Foundation reports that surgery is also an
option for some children to relieve pain, straighten bent or
deformed joints or replace damaged joints.
Alyce Drews says that although Jessica rarely complains about
her condition, the weekly injections of the methotrexate
"really get to her."
"She works herself up and gets upset," says Drews, who pokes a
syringe into her daughter's thigh every Thursday evening.
The morning after, Jessica usually has no appetite. Still, her
mother says, the fifth-grader insists on going to school,
where she is a straight-A student.
"The goal of our therapy is to stop the symptoms which tend to
cause pain, stiffness and an inability to move the joints in a
full range of motion," Adams says. "We also want to stop the
inflammation in the joints before they lead to joint
deformities."
She says patients are typically treated for 18 months to two
years. That includes a year of medication after the symptoms
disappear.
"If Ann has no problems through next July, the doctors will
start weaning her off medication," Lorraine Patterson says.
"She's doing so well. I just hope it continues."
Unfortunately for children like Jessica, diagnosis doesn't
usually come until damage has already been done. Because the
children are still growing, the effects can include growth
deformities, Adams says.
"Doctors don't recognize the early signs of arthritis," Adams
says. "And there are fewer than 180 pediatric rheumatologists
in the country and only on the two coasts and in major
cities."
Though she can't do anything about the number of
rheumatologists, Adams can help educate doctors, teachers and
parents.
Working with the Arthritis Foundation's JRA Initiative, Kids
Get Arthritis, Too, Adams conducts seminars throughout
Michigan on the importance of early diagnosis. The foundation
has also created documents detailing common signs that warrant
observation by a specialist.
"Arthritis is the next great preventable disease after
infectious diseases," Adams says. "We can't prevent it now
with vaccines because we don't know what causes it, but we can
(treat) the bad aftereffects."
Making progress
Alyce Drews says it took several months for Jessica's
medication to work.
But when it did, her life changed.
One year later, Alyce Drews says she sees some minor damage --
"She has a few bent fingers and I hear cracking in her knees"
-- but most people don't notice anything different about her.
'She loves to swim at the beach near our home, and she likes
to catch frogs," her mother says. 'She even plays soccer and
can ride a bike."
Jessica, who also loves to sit with her legs folded beneath
her, even plans to try out for a position on a softball team.
"She shows me every day that she can do anything," her mom
says.
Arthritis Foundation, Michigan Chapter
248-424-9001 / 800-968-3030
www.arthritis.org
University of Michigan C.S. Mott Children's Hospital
Division of Pediatric Rheumatology
Ann Arbor
734-764-2224
Children's Hospital of Michigan Division of Immunology,
Allergy and Rheumatology
Detroit
313-745-4450
American College of Rheumatology
800-283-7800
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