Focus on decreasing pain crises and hospitalizations
The Sickle Cell Disease Program focuses on providing treatment that modifies the course of the disease (referred to as disease-modifying therapy) instead of only treating symptoms such as pain.
For example, the following therapies can potentially provide your child a better quality of life:
Hydroxyurea helps blood cells remain round and flexible. Studies have shown this medication decreases pain crises, acute chest syndrome, and the need for blood transfusions.
Chronic blood transfusion therapy is used to dilute the sickle hemoglobin (HbS) with normal hemoglobin to treat chronic pain, acute chest syndrome, and other emergencies.
Bone marrow or stem cell transplant can provide a cure for sickle cell disease. The procedure replaces abnormal blood cells with healthy stem cells from a donor, stopping the body’s production of diseased cells.
The Sickle Cell Disease Program team includes pediatric hematologists, a child psychologist, nurse practitioners, nurse coordinators, a social worker, a child life specialist and a school liaison. The team works closely with you and your child to maintain good health and identify any potential complications early.
Ongoing care management
Patients are seen every three to six months. In addition, we encourage families to maintain regular follow-up care with their primary care physician or pediatrician for well-child care, including vaccines. The Sickle Cell Disease Program communicates actively with your child’s pediatrician or primary care physician to make sure everyone is as informed about your child’s care as possible.
Clinical trials and research
The program is actively engaged in clinical research about sickle cell disease, with a special interest in strokes, learning difficulties, and bone marrow and stem cell transplant.
This research is aimed at finding new treatment options for patients with sickle cell disease. You may be approached about participating in a research study while you are at your scheduled clinic visit.
Emotional and social support
Our team offers supportive services to help your child live with the day-to-day emotional issues surrounding sickle cell disease. In addition, the program offers teens help in making the transition to being responsible for their own health as they become adults.
Children and adolescents ages 8 to 13 can also find peer support through Camp Crescent, an annual summer camp experience for kids from the St. Louis area with sickle cell disease.
Regionally recognized care
St. Louis Children’s Hospital is a regional referral center for children with sickle cell disease and other hemoglobinopathies. As such, we meet the many needs of almost 400 children with sickle cell disease and their families in the St. Louis area.
In recognition of its outstanding level of care, the program serves as the St. Louis area coordinating center for the Hemoglobinopathy Newborn Screening program of the Missouri Department of Health and Senior Services.