June 19th is World Sickle Cell Day across the globe! Every year, the international health community recognizes Sickle Cell Disease (SCD) as a debilitating genetic disease that impacts families across the globe. Keeping individuals and communities informed about the struggles that come with daily management of SCD, can help raise awareness as well as debunk stereotypes and stigmas associated with persons who have SCD.
DHEC joins the Sickle Cell Disease Association of America (SCDAA) to “Shine the Light on Sickle Cell” for World Sickle Cell Day. Through awareness, education, and research for a cure, we heighten awareness and keep our communities informed of the impact this disease has on over 100,000 Americans.
How Is Sickle Cell Disease Identified?
At birth, every child has a newborn screening test performed to screen for different genetic disorders. Newborn screening consists of testing newborns for certain harmful or potentially fatal disorders that aren’t otherwise apparent at birth. In 1987, sickle cell disease was added to this testing panel to screen newborns for sickle cell disease and sickle cell trait for South Carolina. It is very important to know if your newborn has trait, because you, your partner, and family can determine if additional screening is necessary and what additional steps you should take.
Why Should You Know Your Status?
Considering state-wide testing for SCD was not required until the early 2000’s across the country, there are adults, today, who still are not aware of their sickle cell status. Early detection and diagnosis of sickle cell trait or disease leads to a better quality of life and the ability to make informed decisions. Because sickle cell disease and trait are inherited, meaning it is passed down to offspring, knowing your status will help you know the likelihood of having a child with sickle cell trait or disease. Knowing your status can help you make better decisions about your health and educate others about sickle cell trait and disease.
Where Can you go for Testing?
Individuals can talk with their healthcare provider if they are interested in being tested for sickle cell. Additionally, there are four Sickle Cell Community Based Organizations in the state that provide services, resources, and support for individuals and families living with sickle cell. All four of these organizations – the James R. Clark Memorial Sickle Cell Foundation, Louvenia D. Barksdale Sickle Cell Anemia Foundation, Orangeburg Area Sickle Cell Anemia Foundation, and COBRA Huma Services Agency Sickle Cell Program – can test you and your family. Additionally, these organizations provide nurse case management, genetic counseling, and education.
What Can you do for World Sickle Cell Day?
Join DHEC’s Children and Youth with Special Health Care Needs Division (CYSHCN) in Shining the Light on World Sickle Cell Day by Going Red! You can show your support and increase awareness by wearing Red on June 19th. Take pictures and post on DHEC’s social media to support and increase awareness of this debilitating, life-long disease.
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, 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.