When arthritis strikes children

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.

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