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'Not Your Ordinary Patient'

'Not Your Ordinary Patient'

As a child, Sarah Hill founded a nonprofit that continues to fund research into the condition that threatens the vision of many young patients worldwide.

Like many recent Johns Hopkins University graduates, Sarah Hill has begun to contemplate what’s next in life. And, inspired in part by her father, Peter Hill, M.D., a renowned emergency physician and senior vice president of medical affairs for the Johns Hopkins Health System, she is strongly leaning toward a career in medicine.

Hill, however, has a bit more emotional capital invested in her pursuit of medicine than most of her peers. She suffers from juvenile idiopathic arthritis (JIA), an autoimmune disorder in which the body essentially attacks its own healthy tissues as if they were alien.

JIA carries serious complications, like the well-known joint inflammation common to arthritis. A rarer but more serious complication is uveitis, which can lead to glaucoma, cataracts and full-on blindness if not tended to carefully.

“Sarah is not your ordinary patient,” says Wilmer’s Jennifer Thorne, M.D., Ph.D., a leading expert in uveitis. Thorne, the Cross Family Professor of Ophthalmology, assumed Hill’s care in 2007 from Douglas Jabs, M.D. “Sarah is smart and curious, and she had a lot of questions about her disease and her care that we didn’t have answers to,” says Thorne, who is also the chief of the Division of Ocular Immunology.

Hill experienced uveitis and glaucoma before she was barely 7. In the years since, she’s had corneal transplants performed by Albert Jun, M.D., Ph.D., Wilmer’s Walter J. Stark, M.D. Professor of Ophthalmology; several surgeries for glaucoma performed by Pradeep Ramulu, M.D., Ph.D., Wilmer’s Sheila K. West Professor of Ophthalmology; and she will undergo cataract surgery soon. Nonetheless, the resolute Hill says things are going as well as can be expected. Well enough, in fact, that her disease will not prevent her from becoming a doctor.

“I was reluctant at first to go into medicine mostly because I’ve spent too much time in doctors’ offices, but as I’ve gotten older, I know my passion is in one-on-one patient relationships,” Hill says.

When Hill was barely 10 years old, Jabs challenged his young patient to learn more about her own disease. “He told me, if I could raise some money, he would do the research,” Hill recalls.

With a clever plea to friends and family accompanying a traditional holiday card, Hill founded a nonprofit known as K.U.R.E.—Kids Uveitis Research and Education.

To date, the K.U.R.E. Fund has raised nearly $300,000—most from small donations no more than a few hundred dollars each, Thorne notes. Those funds go exclusively to research into JIA related uveitis. That research has yielded at least six peer-reviewed papers published in medical journals, helped fund uveitis-focused resident research projects and talks at Wilmer, and inspired two major international conferences specifically dedicated to JIA. At one, Hill was a patient voice on a panel of doctors and researchers.

“Sarah is a rock star,” Thorne says. “Other kids with uveitis recognize her on the floor at Wilmer. She’s fun and has a great sense of humor, but, above all, she’s just a resilient and a service-oriented person.”

Hill says that when she transitioned into Thorne’s practice, there was not the slightest hiccup in her care. Thorne picked up right where Jabs left off, and the two women now share more than the typical doctor-patient relationship. Thorne attended Hill’s college graduation dinner and has continued to mentor her through several medical-related internships and volunteer positions, including Hill’s current stint as a program associate for Health Leads at the Harriet Lane Clinic at Johns Hopkins. In that paid role, Hill coordinates important health-related resources—ranging from securing food stamps to acquiring medication—for low-income Baltimoreans.

Together, Hill and Thorne also make determinations as to where and how K.U.R.E. funds will be spent. Their current initiative is a study to better understand the genetic roots of JIA and its associated medical concerns.

Thorne says she has a strong research program going, and she finds herself traveling frequently to speak about JIA and uveitis across the country.

“It’s all because of Sarah and the K.U.R.E. Fund,” Thorne says. “She’s a special woman.”

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