When arthritis strikes children -- The Washington Times

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When arthritis strikes children

By Jen Waters

THE WASHINGTON TIMES

Published March 28, 2006

Hill is looking for the key to unlock the mysteries of her

disease. The Baltimore native suffers from uveitis, a blinding

complication of juvenile rheumatoid arthritis. Although juvenile

rheumatoid arthritis is an autoimmune disease causing inflammation in

joints, 's biggest struggle right now is fighting the

inflammation in her eyes.

In July 2005, 11-year-old began asking friends and

relatives to donate money to the Kids' Uveitis Research and Education

Fund (KURE), which supports research at the s Hopkins Wilmer Eye

Institute in Baltimore. So far, she has raised $50,000.

" There is a box, and it sits on a very high shelf. When you go

to get the box down from the shelf, you cannot reach it ..., "

wrote in a fundraising letter. " Only now do you notice the box is

locked. ... You know, deep in your heart, that all of the things you

need to open the box will arrive, when it is time. "

is trying to find a way to " open the box " and find a cure

by raising awareness about uveitis. She is hoping to help other

children like her who suffer from the condition. If caught early, the

blindness associated with uveitis usually can be controlled.

Ironically, 's eyes are one of her best features, says her

mother, Hope Hill.

" She has incredibly thick eyelashes, " Mrs. Hill says. " It's

something people compliment her about all the time. She has a hard

time thanking them because her eyes are also the bane of her existence. "

Since 's juvenile rheumatoid arthritis was diagnosed at 18

months, doctors have been able to preserve her normal vision, says

her father, Dr. Hill, clinical director for the Department of

Emergency Medicine at s Hopkins Hospital in Baltimore. Her first

flare of uveitis was caught at age 4 during a monthly eye examination.

uses prednisolone acetate, steroid eye drops, five time a

day. She receives an injection on Fridays of methotrexate and takes

cyclosporine by mouth, also for eye inflammation.

She also underwent surgeries to prevent blindness from glaucoma,

a condition in which elevated pressure in the eye can result in loss

of sight, Dr. Hill says. She received shunts that allow for proper

exit of the fluid from the eye. The glaucoma is the result of the

uveitis.

Because of her strict regimen, her eyesight is 20/15. When

started asking questions about uveitis and what the future holds,

however, her doctors were unable to give definitive answers because

of limited information, Dr. Hill says. He is hoping research through

KURE will provide more insight into uveitis in children.

Because juvenile rheumatoid arthritis is difficult to diagnose,

there hasn't been a major study on its prevalence or possible

complications, such as uveitis. The journal Arthritis and Rheumatism

reported in 1998 that 50,000 children were suffering from juvenile

rheumatoid arthritis.

The money is raising is seed money to develop a government-

sponsored multicenter study, Dr. Hill says.

" It's given her a sense of empowerment, " he says. " She can fight

back and do something for herself and others. It's given her a whole

different outlook of freedom. "

KURE is overseen by Dr. Jabs, professor of ophthalmology

and director of the division of ocular immunology at the Wilmer

institute.

After 's diagnosis with juvenile rheumatoid arthritis, she

visited Dr. Jabs for regular eye screenings to see if she would

develop uveitis. He eventually diagnosed her with chronic anterior

uveitis, which is inflammation in the front of the eyes.

There are more than 25 types of uveitis, ranging in severity.

The condition can affect the anterior, middle and back parts of the

eye or the entire eye, and it is not always associated with juvenile

rheumatoid arthritis, he says.

In some types of uveitis, the eye is red, painful and light-

sensitive, he says. Other types feature blurred vision and eye

floaters, little spots floating in the vision. Still other versions,

such as 's, are asymptomatic at the outset.

Thirty years ago, more than one-third of children with uveitis

that was associated with juvenile rheumatoid arthritis ended up

blind, Dr. Jabs says. Now it's probably around 10 percent, he says.

Two things have made a difference: early detection and more

aggressive therapy.

" Our goal is to try to reduce the 10 percent and get it down to

zero, " Dr. Jabs says. " We really would like to see no children go

blind. "

After infection or trauma, the third cause of loss of vision,

legal or functional blindness is inflammatory eye disease causing

scarring in the uveal tract, according to the National Center for

Health Statistics in Hyattsville, says Dr. Sills, associate

professor and director of pediatric rheumatology at s Hopkins

School of Medicine.

" It's totally preventable with attentive ophthalmologic care, "

Dr. Sills says. " Except at teaching centers, the majority of

physicians who see young people with joint disorders are unfamiliar

with this. "

's pen pal, Aurelia Minuet Yong, 12, of Adelaide,

Australia, was diagnosed with juvenile rheumatoid arthritis and

uveitis at the age of 2. She lost the use of her left eye to glaucoma

just after she turned 3. She has no peripheral vision in her right

eye because of the uveitis-caused glaucoma.

" I can only ever remember being able to see through one of my

eyes, " Aurelia says via an e-mail interview. " Sometimes I feel off

balance, and when I am in strange places, I often knock into things. "

Aurelia, whose nickname is Lia, says she is glad has been

able to prevent blindness from glaucoma through her surgeries.

Aurelia's mother, Sorita Yong, discovered KURE while searching the

Internet last fall.

" If I have to have a tube put into my eye, I would still be very

scared and nervous, but I would be comforted by 's success, "

Aurelia says. " It's fun to have an e-pal who knows what I'm going

through. "

Michele Luczak of Owings Mills, Md., also is encouraged to know

of 's perseverance. Her daughter Sydney Frid, 8, was diagnosed

with juvenile rheumatoid arthritis at 18 months. She had her first

bout with uveitis at age 4. She visits the eye doctor every three

months and has normal use of her eyes.

" Sydney doesn't know what life is like without arthritis, " Mrs.

Luczak says. " Whenever we have these checkups at the eye doctor, she

is hesitant to go. She is afraid of what he might say. To know there

is another little girl out there that is going through this is

comforting to her. "

Despite any fears, Sydney has a good attitude about having the

disease.

" It's not that hard actually, " she says. " Sometimes your joints

hurt, but when you're on medicine, it makes you better. It's like you

don't even notice that you have it. "

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