HOUSTON — Considered the most common genetic blood disorder in the world, sickle cell affects 300 million people worldwide. In the United States, most of the 4 million affected with sickle cell trait, including the 18,000 Houstonians with the sickle cell trait, are not aware that sickle cell is not just a Black or African American condition, but in fact affects people of African, Asian, Indian, Latin, Mediterranean, Italian, Greek and Turkish descent. In other words, anyone, including Caucasians or white people, can have sickle cell disease or the sickle cell trait.
Sharing this information about sickle cell is the everyday work of Houston-based charity “As One Foundation,” which was founded by sickle cell carrier and former Houston Texan Devard Darling, who lost his identical twin brother to exertional sickling in 2001 at Florida State University during a football conditioning workout.
“There are so many people with sickle cell trait that have no idea what it is, or how it can effect them,” said Darling. “Especially those who think this it is only in African Americans. At the As One Foundation, we address it all because you don’t have sickle cell disease without the existence of sickle cell trait.”
The organization’s mission is to empower families globally, delivering life-saving sickle cell education.
Despite the disproportionate impact on people of African descent, sickle cell trait receives scant attention, often amounting to just five minutes in a typical medical school curriculum. Compounding this issue, many carriers remain unaware of their status, contributing to the staggering statistic that 97% of sickle cell disease births occur to parents unaware of their trait statuses. Moreover, despite nationwide newborn screening since 2006, individuals of childbearing age born before then may lack awareness of their status. Addressing this, the As One Foundation advocates for more accessible and affordable testing solutions to empower individuals and mitigate the impact of sickle cell disease.
All As One Foundation events and activities acknowledge sickle cell trait and sickle cell disease as factors existing not independent of each other but because of each other. Sickle disease births are prospectively the result of procreation between two sickle cell trait positive parents and any combination of one sickle cell disease parent will certainly result in a sickle cell trait birth, at least. In order to increase quality health care and directly address disparities associated with chronic and acute blood conditions, the As One Foundation seeks to fill knowledge gaps of four distinct populations with our programming: patients, caregivers/families, community members and healthcare providers.
The As One Foundation serves by the philosophy that sickle cell is experienced by not just the patient, so the organization’s service delivery aims to be relevant to everyone while also empowering those that live with sickle cell trait and disease to thrive while challenging the broader community to learn as much as they can about the disorder.
By: Tomia Austin, DrPH, Contributing Writer
