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Pediatric Sickle Cell Program

The UF Health Pediatric Sickle Cell Program – Jacksonville is designed to get children with sickle cell disease into a variety of specialty care routines as quickly as possible.

A team of specialists comprised of University of Florida faculty pediatricians and skilled nursing staff provides a broad range of services to children and their families, from genetic counseling and medical management, to education and emotional support. A particular emphasis is placed on empowering older teens to take control of their lives and their health.

Sickle cell disease is a hereditary abnormality that causes hemoglobin, the protein that carries oxygen in the blood, to change into sickle-like shapes that clog blood vessels and obstruct blood flow. Also known as sickle cell anemia, sickle cell disease primarily affects people of African descent, but it can be present in those of Mediterranean, Middle Eastern and East Indian origin.

Unlike normal red blood cells, sickle cells are hard and pointed and have a tendency to get stuck in narrow blood vessels and block the flow of blood, causing severe pain and other serious problems, even death. Some children with sickle cell disease may show very few symptoms, while others have many. In addition to anemia, they suffer from serious conditions, such as severe pain crises, stroke, bone damage, gallstones, kidney damage, eye damage, delayed growth and multiple organ complications. Aside from a bone marrow transplant, there is no known cure for the disease. Even without a cure, though, children with sickle cell anemia can lead relatively normal, active lives with consistent and regular care and treatment.

Services

The pediatric sickle cell program provide the following services:

  • Adolescent transitional program for patients 16 and older lead by a nurse educator
  • Care coordination with primary care physicians
  • Classroom visitation by staff to talk with teachers and peers
  • Family and caregiver instruction on pain and fever management
  • Guidance to families and caregivers on recognition of the need of emergency care
  • Health education
  • Psychological evaluation and counseling
  • Regular visits with a hematologist/oncologist
  • Social services
  • Support groups for patients and their families
  • Tutorial services for children in all grade levels