The St. Louis Children's Hospital Sickle Cell Disease Program team includes pediatric hematologists, a child psychologist, nurse practitioners, nurse coordinators, a social worker, a child life specialist, a school liaison, and a data manager. Together, this multi-disciplinary team provides medical care and supportive services to meet the many needs of almost 400 children with sickle cell disease and their families in the St. Louis metropolitan area.
Our mission is to provide patients and their families with comprehensive, excellent healthcare, emphasizing improved quality of life and scientific advancements, to better serve those impacted by sickle cell disease. We will live our mission in an environment of cultural competency and community engagement.
- The division operates as a regional referral center for children with sickle cell disease and other hemoglobinopathies.
- In recognition of its outstanding level of care, the division serves as the St. Louis area coordinating center for the Missouri Department of Health and Senior Services Hemoglobinopathy Newborn Screening program and holds a grant from the State of Missouri to provide medical care and genetic counseling to children with SCD and their families.
- The Sickle Cell Disease team communicates actively with primary care physicians to optimize continuity of care. We encourage families to maintain regular follow-up with their primary care physicians for vaccines and other well-child care.
Living With and Managing Sickle Cell Disease
- A major focus of the Sickle Cell Disease Program is to ensure that each child receives appropriate disease-modifying therapy for their SCD,rather than only treating symptoms suchas pain. Examples of disease-modifying therapy include hydroxyurea, chronic blood transfusion therapy, and bone marrow or stem cell transplant. These treatments may not be recommended for all patients, so we encourage patients with SCD and their parents or caregivers to discuss benefits and risks of these treatments with their hematologist.
- The division is actively engaged in clinical research about SCD, with special interest in strokes, learning difficulties, and bone marrow/stem cell transplant. Clinical research studies are the tools doctors use to decide whether a new treatment will help people with SCD. You may be approached about participating in a research study while you are at your scheduled clinic visit.
- Camp Crescent, an annual summer camp experience for children with SCD from the St. Louis area, is staffed by team members from the Sickle Cell Disease Program.
For more information or to schedule an appointment, call 314.454.5437 or 800.678.5437 or email us.