The Sickle Cell Disease Program at Children’s National is among the largest pediatric sickle cell disease programs in the country. Each year, we treat more than 1,400 children and young adults, from birth to age 21, with all types of sickle cell diseases.
Innovative Comprehensive Care
We have helped thousands of patients, but never consider the care we provide routine. Our comprehensive care team works together to develop an individual care plan for every patient.
The program addresses all aspects of a child’s clinical needs. All of the necessary specialists are in one location:
- Nurse practitioners
- Physician assistants
- Social workers
Through blood transfusions and the latest drug therapies, Children’s National specialists lessen the effects of the disease with early interventions through our Infant Sickle Cell Program, and have even cured the disease through our Sickle Cell Transplant Program.
Comprehensive care also means support for families to help them cope with a child’s illness, including a dedicated stress management team. As part of the Center for Cancer and Blood Disorders, patients, parents, and siblings have access to comprehensive mental health and psychosocial services and other helpful resources through the Patient and Family Support Program.
Each year, 80 newly diagnosed infants with sickle cell disease are seen by our Infant Sickle Cell Program team of physicians, nurse practitioners, social workers, genetic counselors and development specialists that provides education about the diagnosis, supportive care, and treatment options to families.
Download a PDF overview of pain management options offered at Children's National for children with sickle cell disease. Before your child begins the transplant process, read more about the Human Leukocyte Antigen (HLA) typing, which is how we identify potential donors. HLA are proteins found on the majority of your body’s cells. HLA typing is a blood test that requires approximately 10mL of blood.
Support Programs for Teens with Sickle Cell Disease
Sickle Cell Adolescent Transition Clinic
Advances in medical treatment and clinical research are allowing individuals with sickle cell disease to live longer, well into adulthood. This increases the need for adult care and systematic processes to transition adolescents and young adults from pediatric to adult care. Researchers have shown that transition is often abrupt and adolescents leave pediatric care without adequate preparation.
Transition should be a carefully planned process where patients transfer their medical care from their pediatric provider to an adult provider. We developed a Transition Clinic to address adolescent and young adult needs in disease knowledge and self-care management in preparation for a successful transfer. The clinic, staffed by nurse practitioner Barbara Speller Brown, DNP, CPNP-PC, and social worker Alexandra Hollman will be held in the Center for Cancer and Blood Disorders for 18 to 21-year-olds with sickle cell disease, every second Tuesday and fourth Wednesday of the month from 12:30 – 5:30 pm.
Appointments can be made by calling 202-476-2140.
STRIVE (Sickle cell Teens Raising awareness Initiating change Voicing thoughts and Empowering themselves)
STRIVE is a hospital-based program that provides teenagers with sickle cell disease with mentoring, peer support, academic assistance, and disease management education. Volunteers from George Washington University meet with STRIVE participants once a week for two hours during the school year. Each program includes interactive education about sickle cell disease including; genetic causes, physiology of symptoms, recent advances in research, and ways to stay healthy and minimize pain. For more information, please contact Lisa Thaniel, DSW, LICSW at 202-476-3555 or email@example.com.