Lifelong care for a lifelong condition

Vaniesha McFadden and her newborn baby daughter have a lot in common. Mothers and daughters often do, but this duo both share a diagnosis of sickle cell disease (SCD). And not only that, but they both receive treatment for the disease from the same program. Prisma Health’s Comprehensive Sickle Cell Disease Program is one of a very few programs that take a “lifespan” approach to sickle cell disease, offering patients lifelong care from the same compassionate team of doctors, nurses and other professionals.

The SCD Program is officially celebrating its 1-year anniversary in September, which is also Sickle Cell Disease Awareness Month. While the program itself is relatively new, it builds on the success of more than 30 years of dedicated pediatric SCD care within our system. The program actively follows more than 300 patients with SCD in over 12 counties in the Upstate and beyond. It has seen adult patients from as far away as Columbia and Charleston.

Vaniesha McFadden and baby Aubree

Vaniesha was one of these patients, and the SCD Program helped see her through her pregnancy, which can often be a maze of potential complications for SCD patients. After navigating her challenging pregnancy, Vaniesha was overjoyed to hear the miraculous first cry of her healthy baby. Soon after, though, routine newborn screening revealed that her daughter, Aubree, also has SCD. Vaniesha was overcome by fears about how she would manage her own illness while also caring for the needs of her daughter. Fortunately, though, the approach taken by Prisma Health’s SCD Program involves treating patients of all ages under the same roof.

During this month of awareness, we both honor the struggle of individuals like Vaniesha who are affected by this chronic illness and celebrate their daily victories. SCD is an inherited disorder of the red blood cell that disproportionately affects the African American community, but can be seen in individuals with ancestry from any malaria endemic area of the world. The disease affects the shape of the red blood cell and can lead to blockage of the critical flow of oxygen to body, resulting in debilitating pain and other severe complications.

While the main focus of Prisma Health’s SCD program is on saving lives through improvements in clinical care, team members are also working diligently with the L.D. Barksdale Sickle Cell Anemia Foundation as well as other local political and church leaders to increase community awareness and advocacy. The L.D. Barksdale Sickle Cell Anemia Foundation, located in Spartanburg, aims to optimize the quality of health care and quality of life for individuals and families impacted by SCD. It offers services such as screening, testing, counseling, psychosocial assessment and help finding financial assistance.

Blog post author Dr. Alan Anderson is medical director of the Comprehensive Sickle Cell Disease Program at Prisma Health.

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