World Sickle Cell Day Shines Light on Need for Support, Services

Malerie Hartsell, MPH, CHES
Program Coordinator
Children with Special Health Care Needs

Each summer, children with sickle cell disease spend a week at Camp Burnt Gin in Wedgefield, South Carolina, enjoying a fun camping experience while learning about the blood disorder, treatment and ways to manage the disease.

The experience is a result of a partnership between the S.C. Department of Health and Environmental Control’s (DHEC) Children with Special Health Care Needs (CSHCN) program and Palmetto Health, which conducts educational activities during the week that foster disease management, positive self-esteem, confidence and independence, while giving the youngsters a positive childhood experience.

“I used to think I was different from everyone else,” one young camper told CSHCN Program Manager, Jessica Drennan last summer during camp. “But then I came to camp and made friends with people just like me. We can go swimming and play basketball and have fun like all the other kids.”

That’s what efforts such as that at Camp Burnt Gin and World Sickle Cell Day are all about: helping those diagnosed with this disease live as normal a life as possible.

World Sickle Cell Day, which is June 19, seeks to raise awareness of sickle cell disease (SCD) and the struggles those diagnosed with the disease and their families go through as well as support and encourage research, treatment and management of the disorder.

 What is SCD? SCD is a blood disorder that causes sickling of the red blood cells, which diminishes the amount of oxygen the red blood cell can carry throughout the body.  Persons who have SCD suffer from crises — episodes of intense and excruciating pain that may be in one or multiple parts of the body when sickle-shaped red blood cells become stuck in a blood vessel and cause a disruption of blood flow in that particular area.  While people are most familiar with sickle cell anemia, someone can also have sickle cell thalassemia, sickle beta thalassemia, or one of the other variations of sickle cell.  The different types of sickle cell are caused by different genetic mutations.

People born with the sickle cell trait usually do not have the symptoms of sickle cell disease, but they could pass the trait on to their children. If one parent has the trait and the other does not, their children won’t inherit SCD but each has a 50 percent chance of having the trait. If both parents have the trait, each of their children has a 50 percent chance of carrying the trait and a 25 percent chance of having SCD.

Who is affected?

While sickle cell disease affects millions of people throughout the world, it is more common among African-Americans. It is estimated that SCD affects 100,000 people in the United States.

 How is DHEC involved?

Under the Bureau of Maternal and Child Health, Division of Children’s Health and the DHEC Lab, the Newborn Screening Program includes tests for SCD, sickle C disease, sickle B thalassemia, and variant hemoglobinopathy disorders and traits, including sickle cell trait.  After a diagnosis is confirmed,  the Children with Special Health Care Needs Program assists South Carolinians by covering medical service expenses, such as physician visits, durable medical equipment, medical supplies, prescription drugs, information and/or referral, and support services. In addition, they provide care coordination, information and referral and support services.

Through partnerships with four community based organizations — the James R. Clark Memorial Sickle Cell Foundation, the L.D. Barksdale Sickle Cell Anemia Foundation, the Orangeburg Area Sickle Cell Foundation and the COBRA Human Services Agency Sickle Cell Program — more persons with sickle cell are able to obtain services and support.  These organizations work tirelessly to provide education and counseling, testing for sickle cell trait, family support and education for hospital staff.

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