September is recognized every year by the health community as Sickle Cell Awareness Month. Sickle Cell Disease (SCD) is a genetic disease that impacts families across the globe. Keeping individuals and communities informed about the struggles that come with the daily management of SCD can help raise awareness, as well as debunk stereotypes and stigmas associated with persons who have SCD.

SCD affects millions of people throughout the world.  Although SCD is most common among African Americans in the United States, it can also affect Hispanics and people whose ancestors come from countries in South Asia (such as India), southern Europe (such as Greece and Italy), and the Middle East (such as Saudi Arabia and Lebanon).

Quick Facts About SCD and SCT

• SCD is a blood disorder that causes sickling of the red blood cells.
• Sickle-shaped red blood cells become stuck in blood vessels and cause disruption of blood flow – this results in crises.
• SCD affects 100,000 people in the United States.
• SCD is an inherited blood disorder from the person’s parent, like any other genetic trait, such, as hair color and texture and eye color

• SCT is where a person inherits one sickle cell gene and one normal gene.
• SCT is not a disease, and the individual is generally asymptomatic.
• SCT affects 1 million to 3 million Americans and 8 to 10 percent of African Americans.
• Persons with SCT can pass the trait on to their children.

SCD and COVID-19
Amid the COVID-19 pandemic, there is significant concern for individuals with underlying medical conditions. The CDC has indicated that persons with SCD and other blood disorders are among groups of individuals at an increased risk of severe illness from COVID-19.

Below are recommendations from the Sickle Cell Disease Association of America (SCDAA) for patients and families with SCD regarding COVID-19:

• Discuss with your healthcare provider about converting all routine in-person appointments to virtual or telephonic.
• Ask your healthcare provider for information about COVID-19 signs and symptoms and the importance of physical distancing to limit chances of exposure and infection. Discuss enhanced emotional connection through virtual or cellular-based modes.
• Continue to seek medical help from your doctor, nurse, or hospital for fever and other signs of infection. Be sure to call first for advice on where to go safely for an evaluation.
• Make certain you have an ample supply of all prescribed medications at home (including analgesics) to manage both acute and chronic pain.
• Adhere closely to the correct use of your medications.

 DHEC’s Sickle Cell Program & Partnerships

DHEC is committed to educating the community and public about the availability of resources and services for individuals and families living with sickle cell disease.  DHEC’s Division of Children and Youth with Special Health Care Needs (CYSHCN), provides assistance to persons with sickle cell disease by covering services, such as: medical expenses, physician visits, durable medical equipment, medical supplies, and prescription drugs.  Assistance is offered to both children and adults who meet eligibility requirements. Additionally, CYSHCN partners with the Newborn Screening Follow-Up program to ensure infants who are newly diagnosed with sickle cell disease have a medical home to address treatment and care for their disease.

In addition to financial assistance and care coordination services, CYSHCN engages with the four Sickle Community Based Organizations in the state — the James R. Clark Memorial Sickle Cell Foundation, – Louvenia D. Barksdale Sickle Cell Anemia Foundation, – Orangeburg Area Sickle Cell Foundation and – COBRA Human Services Agency Sickle Cell Program – to ensure persons living with SCD have access to community resources and support services. Each of these organizations provide genetic screening, counseling, education, case management, and support groups to address the needs of families and individuals living with SCD. If you have questions about testing for you or your family, you can visit one of the four sickle cell community-based organizations.

Sickle Cell Has Many Faces

Sickle Cell Has Many Faces as illustrated through this video by the Center for Disease and Prevention Control. This video highlights how people of different races and ancestry could have SCD.

If you have questions about the DHEC sickle cell program, contact the CYSHCN office at 803-898-0784. For general information about sickle cell disease, visit cdc.gov/sicklecell or https://www.sicklecelldisease.org/.