It is estimated that 1,000 babies are born in the United States each year with sickle cell anemia, a genetic disorder passed down from parent to child. To have the disease, both parents must carry what is known as the sickle cell trait. About 100,000 Americans are currently living with the disease – many of them, like Sutton Hicks, in the Carolinas.
"Sickle cell is very unpredictable," says Sutton. "When I experience a pain crisis that I can't control at home, then I have to go to the hospital to get some additional treatment. When successfully delivered, the emergency treatments provide me with almost immediate relief."
"Sickle cell patients can and do experience dire complications from their condition," says Michael Ruhlen, MD, vice president and chief medical officer of Carolinas Medical Center – Pineville. "It is therefore imperative that we deploy healthcare teams to diligently identify and comprehensively react to pain control and other medical needs associated with a sickle cell crisis."
Although there is no cure for sickle cell anemia, treatments can relieve most levels of pain and help prevent many of the associated problems, which include severe joint, back, muscle and abdominal pain. For physicians and their supporting staff members, the challenge in treating sickle cell patients is that they do not always have a change in their vital signs. Such patients need a thorough evaluation of their complaints while allowing them to explain how they really feel.
"Sickle cell anemia affects multiple systems in the body, so it is essential that our patients have access to those team of experts working together and participating in ongoing consultation," says David Miller, MD, chief of hematology and medical oncology at Levine Cancer Institute. "Carolinas Healthcare System is actively developing such teams to include a primary care physician, a hematologist, a social worker and a nurse. Such connected teams are the best way we envision treating sickle cell anemia patients in non-emergent environments throughout our System."
"It is our goal to develop enduring relationships with patients and their families living with any chronic condition," says Connie Bonebrake, senior vice president and chief patient experience officer at Carolinas Healthcare System. "This month we are particularly reminded of the struggles of those living with sickle cell disease and how important it is that we be committed to providing a consistent experience across every location of Carolinas HealthCare System where these patients come to us for help managing their illness and the associated pain."