Sickle Cell Disease (SCD) is a debilitating genetic disease that impacts many families across the globe. Every September is recognized as National Sickle Cell Awareness Month to help focus attention on the need for research and treatment of sickle cell disease.
This year’s theme, Sickle Cell Matters, also highlights the need to raise awareness about the daily struggles of those living with Sickle Cell Disease (SCD) as well as dismantle the stereotypes and stigmas associated with persons who have the disease.
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:
- 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 over 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.
Quick Facts About Sickle Cell Trait (SCT):
- 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 individuals in the US
- Persons with SCT can pass the trait on to their children.
SCD and COVID-19
Individuals living with SCD already report a higher rate of severity and hospitalization from influenza, but less is known about COVID-19 in people with SCD. The Medical College of Wisconsin SECURE-SCD Registry collects information on COVID-19 cases in people living with SCD in the US. Data were reported between March 20, 2020 and May 21, 2021.
Of the 178 people reported in the US to the SCD-COVID-10 case registry:
- 122 were hospitalized during their COVID-19 illness, and
- 19 were admitted to the ICU, and
- the average age was 28 years old.
The CDC acknowledges the findings from the report highlight the need for people with SCD to take extra precautions to prevent 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. Encourage 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 and the opportunity to access specialty care 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, please visit one of the four sickle cell community-based organizations.
If you have questions about the DHEC sickle cell program, contact the CYSHCN program office at 803-898-0784. For general information about sickle cell disease, visit cdc.gov/sicklecell or https://www.sicklecelldisease.org/.