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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- 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
- Ronald McDonald House of Orlando: a safe, free, family-centered home away from home when your child is sick and needs to be hospitalized
- 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
When your child is diagnosed with sickle cell disease, your immediate concern is getting the best care available. At Nemours Children's Clinic, Orlando, that’s our concern, too. Our board-certified pediatric hematology experts — doctors who treat blood disorders in children — are part of our Sickle Cell Program, and will use the latest advancements for sickle cell anemia treatment to care for your child’s blood disorder.
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. Our experts will confirm the 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
- pediatric psychologists
- registered nurses
- 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 sickle cell anemia treatment
- 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