- The Washington Times - Monday, March 27, 2006

Sarah 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, Sarah’s biggest struggle right now is fighting the inflammation in her eyes.

In July 2005, 11-year-old Sarah began asking friends and relatives to donate money to the Kids’ Uveitis Research and Education Fund (KURE), which supports research at the Johns 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 …,” Sarah 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.”

Sarah 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, Sarah’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 Sarah’s juvenile rheumatoid arthritis was diagnosed at 18 months, doctors have been able to preserve her normal vision, says her father, Dr. Peter Hill, clinical director for the Department of Emergency Medicine at Johns Hopkins Hospital in Baltimore. Her first flare of uveitis was caught at age 4 during a monthly eye examination.

Sarah 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 Sarah 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 Sarah 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. Douglas Jabs, professor of ophthalmology and director of the division of ocular immunology at the Wilmer institute.

After Sarah’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 Sarah’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. Edward Sills, associate professor and director of pediatric rheumatology at Johns 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.”

Sarah’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 Sarah 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 Sarah’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 Sarah’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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