As a parent, hearing your child has sickle cell disease can be overwhelming. But with early diagnosis, progressive treatment, and regular follow-up care, Nemours' board-certified pediatric hematologists — doctors who treat blood disorders — can help your child manage sickle cell anemia symptoms and live an active and productive life.
Sickle cell disease or sickle cell anemia is a genetically inherited blood disorder, detected through a blood test. The disease is passed down from both parents who carry an altered hemoglobin gene, which causes their red blood cells to take on an abnormal (sickle) shape rather than the normal, smooth disc shape.
For Appointments: (904) 697-3600
Comprehensive Sickle Cell Clinic: Offered weekly
Sickle Cell Transition to Adulthood Clinic: Offered twice monthly in conjunction with the Comprehensive Sickle Cell Clinic
- photo ID
- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
Bring these forms for your first appointment:
Returning Patient Forms
- Patient Presents Without Legal Guardian (PDF)
Note: A parent or legal guardian must be with a child for a first visit.
Resources for Patients & Families
- Sickle Cell Disease Fever Protocol (PDF)
- Hydroxyurea Information Instructions (PDF)
- Camp Boggy Creek: Located in Eustis, FL, this year-round, free camp works in association with the Hole in the Wall Gang Camp, and is open to children with cancer and blood disorders between the ages of 7 and 16, and their siblings
- Hope and Destiny: A Patient’s and Parent Guide to Sickle Cell Disease and Sickle Cell Trait by Allan F. Platt, Jr.: An informative guide given to parents of children with sickle cell disease
As a parent, knowing your child has been diagnosed with sickle cell disease can be worrisome. At Nemours Children's Specialty Care, Jacksonville, our board certified pediatric hematologists — doctors who specialize in treating blood disorders in children — can help ease your worries. Our specialists, and others in our Sickle Cell Program, will care for and treat your child with sickle cell disease and other blood diseases, with the latest treatment advancements.
What is Sickle Cell Disease?
Sickle cell disease is a genetic disorder in which abnormally shaped red blood cells — that look like the letter “C” — get stuck and prevent oxygen from flowing through blood vessels in your child’s body. When this happens, it causes a lot of pain for children diagnosed with sickle cell disease, and can be harmful to other organs and tissues.
Children diagnosed with sickle cell disease, inherited a sickle cell gene from both parents. However, if a child only inherits one gene, the child will not have the disease, but will carry the sickle cell trait.
Florida, like most states, requires newborn screening — a simple blood test — for sickle cell disease. When your child’s hemoglobin is abnormal, you and your child will be referred to the Nemours Sickle Cell Program where our pediatric hematology specialists will begin the process of caring for your child. We will confirm your child’s results from the newborn screening with a hemoglobin electrophoresis blood test.
At Nemours, our goal is to make sure you and your child can successfully cope with living with a chronic condition like sickle cell disease.
Our team of experts, are dedicated to helping your child manage the symptoms of sickle cell anemia and includes:
- board-certified pediatric hematologists
- board-certified pulmonologists — lung doctors
- advance registered nurse practitioners
- licensed clinical social workers
- blood bank personnel
- other Nemours specialists as needed
Most children with sickle cell disease symptoms include chronic pain in the legs, arms, chest and abdomen. These symptoms occur when sickle cells block the flow of blood through the vessels within the body.
Depending on your child’s condition, other treatments for sickle cell
- pain management
- intravenous fluids (IV)
- blood transfusion
Our sickle cell disease experts also will provide your family with resources and education about your child’s care and treatment such as:
- chronic transfusion protocol: treatment for children at risk for complications including stroke, recurring acute chest syndrome, and chronic pain — depending on your child’s severity, length of transfusion therapy can range from age 6 months to life
- the availability of research studies on sickle cell disease
- transition to adulthood concentration
- resources about family support groups and community programming