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Johns Hopkins Medicine
Office of Corporate Communications
Media contact: John Lazarou
Friday, September 2, 2005
BALTIMORE GIRL WITH JUVENILE RHEUMATOID ARTHRITIS TO HELP KIDS LIKE HER
-Focus is on blindness as a complication-
Efforts to fight or find cures for adults’ life-threatening or life-altering diseases are many and noble: marathon runs, marches, bracelets and expensive gatherings for adults.
Earlier this summer, a 10-year-old Baltimore girl launched her own effort to help find care and a cure for others like her with uveitis, a potentially of blinding complication of juvenile rheumatoid arthritis (JRA).
Sarah Hill, whose father is Peter Hill, M.D., clinical director of the Department of Emergency Medicine and medical director of the emergency acute care unit at The Johns Hopkins Hospital, was diagnosed with an autoimmune disease characterized by inflammation and stiffness in her joints at age 1 and with the disease’s leading complication, a potentially blinding condition called uveitis, at age 3.
Uveitis refers to several diseases characterized by inflammation inside the eye, one of which is associated with JRA. At first, JRA-associated uveitis has no symptoms, but over time the inflammation can cause damage leading to loss of vision. Treatments include corticosteroid and pupil-dilating eyedrops and, in more severe cases, oral medications or injections to help reduce inflammation and prevent vision loss. The uveitis in JRA is chronic and may last for years or even decades. However, because the condition is uncommon, research to improve treatment or for prevention is difficult.
In July, Sarah began asking friends and relatives to donate money to the Kids’ Uveitis Research and Education (K.U.R.E.) Fund she started at the Johns Hopkins Wilmer Eye Institute. With the money, the fund will develop a database of children with uveitis and track them through adulthood to find out how this disease progresses and learn which treatments show the best results in controlling this disease and treating one of the main complications of this disease: glaucoma. This information will educate patients, their families, and ophthalmologists, ensuring that every child receives the most advanced care possible. Sarah’s ultimate dream would be for the fund to act as a resource for families with children like her, helping them access the care that they need and even helping with the costs of medication for needy families and help to fund research.
“I decided to start the fund at Wilmer since I know this is where many families bring their kids to get better,” Sarah said. “Maybe one day children won’t have to worry about this, and they won’t need to take medicine or have surgery to make them well.”
Within her first two months of fund raising, via a letter campaign, she has raised more than $12,300.
In her request, Sarah tells her story and openly questions what the future holds for her and other children with uveitis. She wonders who will find the cure, when it will happen, and how many others can be helped. “I have the best doctors and I get the best care. I still have great vision,” added Sarah. “I wish all children like me were as lucky.”
Sarah’s primary ophthalmologist, Douglas Jabs, M.D., M.B.A., professor of ophthalmology and medicine, director of the Division of Ocular Immunology at the Wilmer Eye Institute, and an expert in uveitis and related immune-mediated eye conditions, says many children unfortunately are not as lucky. Children with this type of uveitis, if not diagnosed early and not treated appropriately, have a high risk of vision loss.
Dr. Jabs says the best course of action in JRA is to screen children at high risk for uveitis routinely and to treat the disease aggressively. Many children will need therapy for years.
“Many children with JRA-associated uveitis will require systemic therapy and regular laboratory monitoring to treat the inflammation and to prevent blindness,” added Jabs. “We hope this fund will help us learn how best to use these drugs and to prevent blindness among these children.”
Hill says that Sarah remains strong in her ongoing battle against arthritis and its complications to her eyesight.
“Sarah so far has successfully battled complications that could have caused a permanent loss of vision, and she continues to do well,” said Hill. “Our family is so proud of her; not only for her unyielding strength and determination, but for her genuine concern for others and her desire to help those in need.”
In the coming months, Sarah, with help from the Johns Hopkins Wilmer Eye Institute development office, is planning additional events to increase awareness and help generate more support for the fund.
Her adultlike efforts have caught the attention of others within Wilmer. Peter McDonnell, M.D., director of the Wilmer Eye Institute, thanks Sarah for her efforts and her family for helping those in need.
“It is exceptional to have a young girl like Sarah try to help others,” he said. “I applaud her efforts and her family.”