Leon Cheathem came to Harlem Hospital's pediatric sickle cell center in the early 1970's, when he was only 6 years old. At that time many children with sickle cell disease suffered early death from stroke, infection and cardio-pulmonary distress. Yet today Cheathem is a grown man in his 40s, with six daughters of his own.
"The doctors at Harlem Hospital always made me believe I could do anything I wanted," he said. Cheathem took that belief to heart, and today he runs the recreation department at an afterschool program in his community.
"Watching your child in such terrible pain is the worst thing you can imagine," said his mother, Alice Medford. "And you know there's nothing you can do. You can't even hold him because anything that touches him hurts."
She said the Harlem Hospital program is one of the main reasons her son is alive today. "Harlem Hospital's sickle cell program is life-saving and life-changing."
Sickle cell disease is caused by a gene mutation that affects a patient's red blood cells, giving them a crescent shape, making them fragile and causing them to lodge in blood vessels. Treatment often begins for children shortly after birth, since a sickle cell screening test is now required for all newborns in most states. Children with sickle cell disease often take penicillin daily to prevent infections and strokes.
Harlem Hospital's Sickle Cell Center has been providing care to young patients since it opened in 1972. About 100 patients are on the center's outpatient census at any one time. Thanks partly to the research and treatment done there and in other sickle cell centers, more young patients today survive to adulthood and thrive than did in the past, said Gloria Moore, RN, Program Coordinator for the Harlem Sickle Cell Center.
With that comes a growing need for specialized care for adults with sickle cell disease, said Dr. Katherine Ender, Director of the Harlem Sickle Cell program. Dr. Ender's program has just received a five-year, $226,000 grant from the New York State Department of Health for a program to transition pediatric sickle cell patients into appropriate adult care. She said the grant will provide partial funding for the Center to hire a navigator who prepares the patients for the transition, teaching them how to utilize adult health services.
Palliative care is also important for sickle cell patients to help them address chronic pain. Dr. Ender believes one of the most important aspects of the sickle cell program is that it ensures that the patients receive comprehensive healthcare.
"The patient must receive primary care for all standard health needs, in addition to specialized care for sickle cell disease. It's particularly important for them to get the regular annual screening evaluations that sickle cell patients need," she said.
Gloria Moore has seen tremendous progress in the 30 years she's been a nurse with the program.
"Sickle cell disease used to be something that almost always led to early mortality," she said. "Now it's more a chronic disease, like diabetes. There's no cure, but patients can learn how to manage it."
In addition to Harlem Hospital, HHC facilities that treat children with sickle cell disease are Kings County Hospital in Brooklyn and Queens Hospital.