Help is available for those challenged by sickle cell disease

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

When a child inherits sickle cell disease it can cause emotional, financial and other strain on a family.

It also raises serious questions, such as “How will our child cope with a disease that can cause sudden extreme, pain-filled episodes?” or “How will our family handle the challenge of caring for a child with a chronic, untreatable illness?”

While families bear much of the load, there are services in place to help, including those available through the S.C. Department of Health and Environmental Control’s Children with Special Health Care Needs program.

What kind of help does Children with Special Health Care Needs offer?

 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. Based off DHEC Lab Newborn Screening data, there are approximately 70 babies born with SCD annually and over 2,400 babies identified to have SCT.

After a diagnosis is confirmed, the Children with Special Health Care Needs Program assist South Carolinians by covering:

  • medical service expenses
  • physician visits
  • durable medical equipment
  • medical supplies
  • prescription drugs

Additionally, Care Coordinators in DHEC Regional offices provide information and/or referral, and support services.

Every summer, children with sickle cell disease spend a week at Camp Burnt Gin in Wedgefield, South Carolina, where they enjoy a fun camping experience while learning about blood disorders, treatment and ways to manage the disease.  The week at Camp Burnt Gin is a partnership between DHEC’s CSHCN program and Palmetto Health, which conducts educational activities during the week that foster disease management, positive self-esteem, confidence and independence, while giving campers a positive childhood experience.

Community based organizations at work

Through partnerships with four sickle cell community based organizations — the James R. Clark Memorial Sickle Cell Foundation, the Louvenia 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 educations and counseling, testing for sickle cell trait, family support and education for hospital staff.

Throughout September, which is Sickle Cell Awareness Month, each community based organization will engage community members in different events to help promote and increase awareness about SCD.

If you have questions about testing for you or your family, you can visit one of the four sickle cell community based organizations.  For more general information about sickle cell, visit cdc.gov/sicklecell or http://www.nhlbi.nih.gov/health/health-topics/topics/sca.

SickleCellSeptemberEvents

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