Sickle Cell Disease

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.

Drawing of how sickled red blood cells look different to normal red blood cells


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

A simple blood test can show if you have sickle cell disease or trait. It is most often completed at birth during routine Newborn Screening tests. Because of the risk and complications associated with SCD, early diagnosis and treatment are important. Currently, the only cure for SCD is bone marrow or stem cell transplant.

If you or someone you know is interested in being tested, you may contact your doctor, or a local community-based sickle cell organization.

No. The following drawings help explain the different ways children may be affected depending on which hemoglobin type each parent has.

A person with SCD can live a long and high-quality life. The following tips can help someone with SCD stay healthy as possible.

  • Find a medical provider and get regular checkups or exams.
  • Follow treatments as prescribed by your medical provider, such as taking medications.
  • Prevent infections by taking simple steps including washing your hands.
  • Practicing healthy habits, like drinking 8 to 10 glasses of water per day and eating healthy food.

The DHEC Sickle Cell Program works to increase public awareness on SCD-related topics through education and client assistance. In addition to education, the program provides financial assistance and services for people living with SCD. For more information about the DHEC Sickle Cell Program and how to apply, click here.

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.

Registry FormInformational Card (pdf)


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

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.