Elaine Cox, M.D., clinical assistant professor of pediatrics, and Denise Shalkowski, R.N., collaborated on A Family's Guide to Living with HIV, a 76-page book that includes a wide range of helpful information. Free copies of the book have been sent to pediatric HIV programs around the country.
"It's important to remember that there is more to the child in our clinic than just his or her disease," says Dr. Cox, who sees virtually all children in Indiana afflicted with HIV at the Ryan White Center for Pediatric Infectious Disease at Riley Hospital.
Dr. Cox and Shalkowski detail medical information about the disease, clinic visits, psychological concerns, how medications work and their side effects, a glossary of terms and a listing of helpful resources. The publication also focuses on lifestyle issues for HIV patients and their families, including nutrition, school activities, sports, travel and sexuality.
"We wrote the book so that our patients and their families could have the information written in a way they could understand," Dr. Cox says. "This is a very complicated illness and makes for a complicated lifestyle."
Every family with a patient having HIV who visits the Ryan White Center receives a free copy of the book. Children's hospitals and the general public requesting the free guide can obtain a copy by contacting the Riley Infectious Disease Department at 317-274-7260. It also can be downloaded at www.clarian.org/pdf/hivguide.pdf.
The Ryan White Center for Pediatric Infectious Disease is named in honor of Ryan White, whose high-profile battle against AIDS captured the attention of the world. White, who was treated for his disease at Riley Hospital by IU physicians, died in 1990.
In his Feb. 2 State of the Union address, President George W. Bush called for the reauthorization of the Ryan White Comprehensive AIDS Resources Emergency Act, which provides federal support for health and social services for individuals living with HIV.
An estimated 900,000 people in the United States are living with HIV, including up to 200,000 who do not know they are infected, according to the Centers for Disease Control. During 2003, an estimated 32,048 new diagnoses of HIV infection were reported. Of these, 72 percent of patients were adult or adolescent males; 27 percent were among adult or adolescent females; and less than 1 percent was among children under 13.
A Family's Guide to Living with HIV was funded, in part, by an educational grant from Roche Laboratories and the IU Department of Pediatrics.