CareTalk: Blog for Cancer and Blood Disorders
Get insights and inspiration from Nemours’ experts in Hematology/Oncology.
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.
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When your child is diagnosed with sickle cell disease, your immediate concern is getting the best care available. At Nemours, that’s our concern, too. Our pediatric hematology experts — doctors who treat blood disorders in children — will use the latest advancements and sickle cell anemia treatment available to care for your child.
As the only health care provider with pediatric hematology/oncology specialty services in the Gulf Coast and Florida Panhandle, our specialists have the experience to care for your child. Every day, we help families like yours throughout the course of your child’s care, providing the resources and education you need to feel well-prepared for your child’s ongoing treatment.
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 newborn child will be referred to the Nemours Sickle Cell Program where our pediatric hematology specialists will begin the process of caring for your child.
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.
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.
Once your child is diagnosed with sickle cell disease, your child should be seen by one of our sickle cell disease experts every 2 to 3 months until age 2. After age 2, frequency of visits depends on your child’s or your family’s needs, but at least annually thereafter.
Newborn children diagnosed with sickle cell disease will begin taking penicillin to help prevent infection, and a daily supplement of folic acid.