Comprehensive child sickle cell care

The Pediatric Sickle Cell Program at Penn State Health Children’s Hospital provides comprehensive care to children, adolescents and young adults living with all types of sickle cell disease. Our expert team focuses on improving your child’s health by developing an individualized treatment plan that includes preventive care and therapy for both ongoing symptoms and acute complications. As a patient in our program, your child has access to specialists in pediatric hematology, pulmonology, cardiology, ophthalmology, nephrology, orthopedics and neuropsychology.

Living with sickle cell disease

What is sickle cell disease?

Sickle cell disease is a chronic hereditary blood disorder that affects the hemoglobin molecule within the red blood cell. This genetic mutation leads to the production of abnormal hemoglobin, the protein in the red blood cell responsible for carrying oxygen from the lungs to all of the tissues in the body. It also causes the shape and flexibility of the red blood cell to change, which leads to the obstruction of blood flow within blood vessels. Currently, sickle cell disease affects around 90,000 to 100,000 Americans, with about 2,000 additional cases diagnosed in newborns each year. Sickle cell trait is not the same as sickle cell disease. 

Sickle cell disease types

  • Hemoglobin SS: the most common and most severe type of sickle cell disease
  • Hemoglobin SC: second most common type of sickle cell disease
  • Hemoglobin SB 0 (Beta Zero) Thalassemia
  • Hemoglobin SB+ (Beta Plus) Thalassemia

Additional types of sickle cell disease exist and may be treated within our program. Please call 717-531-6012, option 2, with your questions.

Signs and symptoms

  • Anemia: The most common feature of sickle cell disease, anemia can result in fatigue that impacts quality of life.
  • Pale or yellow skin or eyes: Red blood cells that become sickled break down and result in the release of bilirubin. Increased bilirubin levels lead to jaundice or yellowing of the eyes and skin.
  • Pain (vaso-occlusive sickle cell crisis): Pain is the most common complication of sickle cell disease. Blockage of blood vessels due to sickled cells can lead to tissue damage, causing pain.
  • Acute chest syndrome (ACS): ACS occurs when sickled cells or infection are in the lung tissue, leading to tissue damage.
  • Infection: Due to sickling events in the spleen, the spleen becomes nonfunctional and puts patients at increased risk for bacterial infections. Patients with sickle cell are at risk for bloodstream infections, meningitis and pneumonia.
  • Splenic sequestration: Sickled red blood cells can become trapped in the spleen and lead to worsening anemia.
  • Stroke: Sickled cells can block the blood supply to the brain and lead to a stroke.
  • Priapism: Sickled cells in the blood vessels of the penis can lead to an unwanted, painful erection.

Sickle cell treatment

  • Regular preventive care, including routine vaccinations
  • Disease-modifying medications (talk to your provider for details)
  • Blood transfusions
  • Genetic therapies
  • Bone marrow transplant

School support for students with sickle cell

Children and adolescents with sickle cell disease have the right to accommodations at school. Because of the cognitive impact sickle cell can have, some children qualify for an Individual Education Plan or IEP. This means the school will evaluate your child to determine what support they may need. For sample accommodations, visit Pennsylvania Department of Education or the Centers for Disease Control and Prevention.

Your child’s sickle cell team can guide the school nurse and counselor on ways to support them in the academic setting. A team neuropsychologist also is available to provide screenings and evaluations.

When your child enters college, they should discuss their rights to accommodations under Section 504 of the Rehabilitation Act of 1973 with the Special Education Department. 

Who we serve

  • Anyone with a diagnosis of sickle cell disease, no matter the type
  • From birth through transition to young adulthood (up to age 21)
  • Primarily central Pennsylvania residents
  • Any insurance status

What to expect

Patients enrolled in the sickle cell program meet with providers on the second and fourth Friday of the month by appointment only. During your child’s visit, they will see a pediatric hematologist or pediatric nurse practitioner, social worker and nurse coordinator. When needed, we will provide a referral to Penn State Health Pediatric Specialties. If diagnostic testing is necessary, Lab Services and Transcranial Doppler ultrasound, a test that measures blood flow to and within the brain, are available on the same medical campus.

Services provided

  • Regular medical care from a pediatric hematologist or pediatric nurse practitioner
  • Laboratory testing
  • Social services
  • Patient/family education
  • Neuropsychology
  • Medical specialty referrals

Resources

National programs

Community supports

Sickle cell disease scholarships and grants

Make-A-Wish

Make-A-Wish America grants life-changing wishes for children with critical illnesses who meet the eligibility guidelines. Talk with your treatment team to learn what specific qualifications there are for sickle cell disease.

Visit the local chapter website for more information.

Camps

Helpful apps

Meet the Team

Pediatric Hematology/Oncology

Gayle M. Smink, MD, MPH
4.9 out of 5

Gayle M. Smink, MD, MPH

Pediatric Hematology/Oncology
Location(s)
Penn State Health Children's Lancaster Pediatric Center
Penn State Health Pediatric Specialties
800-243-1455

Child and Adolescent Psychology

Additional team members

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Research & Clinical Trials

We have an active clinical science research program and frequently seek volunteers to participate in clinical trials. These studies help our scientists improve diagnostic techniques, develop better treatments, and collaborate with other researchers.

Find Clinical Trials