Sickle cell disease is a group of conditions that affect hemoglobin, which allows red blood cells to carry oxygen to all parts of the body. Red blood cells that contain sickle hemoglobin are inflexible and can stick to blood vessel walls, causing a blockage that slows or stops blood flow.
When this happens, oxygen cannot reach tissues, leading to sudden, severe pain. The poor oxygen delivery can damage the brain, spleen, eyes, lungs, liver and multiple other organs. All tissues within the body are at risk for damage because of the obstruction of blood flow.
Common chronic complications of sickle cell disease include:
- Dactylitis, a painful swelling of hands and feet in children;
- Acute chest syndrome, a serious, often deadly complication involving the lungs;
- Chronic organ damage;
- Stroke; and/or
- Kidney failure.
These complications can cause early death. People with sickle cell disease have a life span that is 20-30 years shorter than people with normal hemoglobin. In the United States, sickle cell disease is most common in the African American population and people of Mediterranean, Middle Eastern, and Indian ancestry. Sickle cell disease also affects other groups, including Hispanics/Latino and Asian people.
In 1973, the North Carolina General Assembly enacted House Bill 32 which established the North Carolina Sickle Cell Syndrome Program (NCSCSP). The legislation also created the Governor’s NC Appointed Council on Sickle Cell Disease and Other Blood Disorders, a 15-member advisory group comprised of persons and families affected by sickle cell disease, community-based organization representatives, hematologists and experts in treating sickle cell disease, and state and public health officials.
The NCSCSP works closely with the Governor’s Council to address the changing needs and issues of the sickle cell community. The NCSCSP is part of the NCDHHS' Division of Public Health/Women, Infant, and Community Wellness Section-Infant and Community Health Branch. The mission of the NCSCSP is to promote the health and well-being of persons with sickle cell disease through the reduction of morbidity and mortality and the heightened awareness of the disease and its complications.
Through its network of regional sickle cell educator counselors and case managers, the NCSCSP implements a systematic, statewide approach to service delivery. The program provides infants, children, adolescents and adults affected by sickle cell disease with newborn screening follow up, care coordination, referrals to clinical and related services, access to a reimbursement program to assist with medical services for eligible patients, and sickle cell educational materials and information.
Additionally, the NCSCSP provides trait counseling to those identified as having sickle cell trait. In North Carolina, an estimated 90,000 people have sickle cell trait or a related hemoglobin trait such as C trait, E trait and beta-thalassemia trait. Being a carrier of sickle cell trait puts you at risk of having a child with sickle cell disease. Counseling informs individuals about inheritance patterns of sickle cell disease and increases knowledge and awareness of their hemoglobin status when making reproductive life planning decisions.
As sickle cell disease affects typically underserved populations and is a prime example of racial inequality in health-care settings, the NCSCSP is committed to providing quality care and services to "Bring Hope and a Brighter Future" to those living with sickle cell disease and their families.
Learn more about the North Carolina Sickle Cell Syndrome Program and read real stories from people living with sickle cell trait and sickle cell disease on the Centers for Disease Control and Prevention’s website.