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.
Pensacola
Nemours Children's Clinic, Pensacola
5153 North Ninth Avenue
Pensacola, FL 32504
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Hours: Monday - Friday: 8 a.m. - 5 p.m. (Central Time)
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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
New Patients
Bring these forms for your first appointment:
- Authorization for Treatment and Release of Information (PDF)
- Assignment of Benefits (PDF)
- Notice of Limited Liability (PDF)
Returning Patients
- Patient Presents without Legal Guardian (PDF)
Note: A parent or legal guardian must be with a child for a first visit.
Hematology Department Form
Returning Patients
- Patient Presents without Legal Guardian (PDF)
Note: A parent or legal guardian must be with a child for a first visit.
New Patient Forms
Hematology Department Form
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
- Insurance We Accept: See accepted insurance, listed by location
- Pay Your Bill: Use online bill pay or send by mail
- Financial Assistance: Help with your child's health care expenses
- MyNemours: Access your child’s medical record online
Information on Sickle Cell Disease
Support Groups for Children With Sickle Cell Disease
- Make-A-Wish Foundation: The nation’s largest wish-granting organization that gives hope, strength and joy to children with life-threatening medical conditions
- Gulf Coast Wings of Hope
For Overnight Stays
- Ronald McDonald House of Northwest Florida: Located near Nemours Children’s Clinic, Pensacola and Sacred Heart Children’s Hospital, this family-centered home away from home is available to families whose child needs to be hospitalized for treatment
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.
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 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.
Our experts will:
- confirm the results from the newborn screening with a hemoglobin electrophoresis blood test
- provide education and introduction to our services and ongoing comprehensive care
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
- nurses
- a dedicated hematology nurse coordinator
- psychosocial support
- licensed clinical social workers
- blood bank personnel
- Child Life specialists from Sacred Heart Children’s Hospital
- 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.
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.
Depending on your child’s condition, other sickle cell anemia treatment may include:
- antibiotics
- hospitalization
- pain management
- intravenous fluids (IV)
- blood transfusion
- surgery
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: regular blood transfusions to prevent strokes
- the availability of research studies on sickle cell disease when pertinent
- transition to adulthood concentration
- resources about family support groups and community programming
