What is Sickle Cell Disease?
Sickle Cell Disease (SCD) is a group of inherited red blood cell disorders that is present from birth. Normal red blood cells are round and move easily through blood vessels. For someone who has SCD, the red blood cells become hard and sticky, and have a C-shape, like a farmer’s sickle. These “sickled” cells become stuck in blood vessels and block blood flow. In addition to the changes in red blood cell shape, these sickled cells die early, which results in a constant shortage of red blood cells. This can cause pain, damage to body organs and anemia.
SCD is inherited, which means it can run in families. It occurs when a person gets two sickle cell genes, one from each parent. A person cannot catch this disease from someone else.
What is Sickle Cell Trait?
Sickle cell trait is not a disease, but it can be passed on to your children. When a person has sickle cell trait (SCT), they are a carrier of the sickle cell gene. This means a person with SCT could pass the trait on to their children. People who inherit one sickle cell gene and one normal gene have sickle cell trait. However, someone who has SCT will not get SCD; sickle cell trait does not change into sickle cell disease.
Frequently Asked Questions
South Carolina (SC) Sickle Cell Disease Registry
In the 124th Session of the SC General Assembly (2021-2022), members passed the “Rena Grant Sickle Cell Disease Voluntary Patient Registry Act” which directed the development of a sickle cell disease voluntary patient registry by DHEC. For more information and a copy of the legislation, please see the act.
Launching in 2023 the South Carolina Sickle Cell Disease Registry facilitates the collection of data about incidence and the nature of SCD in the Palmetto State to educate physicians and other health care practitioners to promote the coordination of services for people with SCD. The goal of the state’s Sickle Cell Disease Registry is to unite patients, caregivers, and health care providers, across South Carolina to share knowledge and experiences, and accelerate progress and advancements in patient care and treatment.
Help Getting Started in the Registry
Patients or Caregivers
Healthcare Providers
A Call to Action: South Carolina Sickle Cell Disease State Plan
The overarching goal of the South Carolina Sickle Cell Disease State Plan is to provide a framework in developing systematic and coordinated strategies that address the lack of resources available to treat and care for patients with sickle cell disease. Developed by the South Carolina Sickle Cell Disease Advocacy Team, the plan addresses public awareness and education, health care provider education, access to health care, and funding.
Resources and Materials
- SC Sickle Cell Disease Provider Statewide Directory
- Transition Resource for Persons Living with SCD
- Sickle Cell Disease Brochure
- Sickle Cell Services for Adults Booklet
Questions?
If you have questions about getting services for your child or youth with special health care needs, please contact the Children and Youth with Special Health Care Needs (CYSHCN) program. You can do so by emailing cyshcn@dhec.sc.gov, calling (803) 898-0784 or visiting a location near you. You can also contact one of the community-based sickle cell education and counseling agencies listed below.
- James R. Clark Memorial Sickle Cell Foundation
1420 Gregg St. | Columbia, SC
(800) 506-1273 - L.D. Barksdale Sickle Cell Anemia Foundation
645 South Church St. | Spartanburg, SC
(864) 582-9420 - Orangeburg Area Sickle Cell Foundation
825 Summers Ave. | Orangeburg, SC
(803) 534-1716 - COBRA Human Services Agency Sickle Cell Program
3962 Rivers Ave. | Charleston, SC
(800) 354-4704