Beyond the Crown: Championing the Visibility and Voices of Sickle Cell Patients

Photo: Dima Hendricks Dima Hendricks is still getting used to being seen. It’s hard to miss someone wearing a sparkling crown and sash, particularly at a blood drive. But the unique attention drawn to her is empowering – especially for someone navigating a world where her disease and at times the humanity of her being have gone unseen. Managing life with sickle cell disease at the forefront has been the only life Dima’s known. She was born with the genetic blood disorder, yet at a time when newborn screening was not mandated. As a result, she went undiagnosed until she was six months old. While the complications and excruciating pain the disease caused Dima couldn’t always be detected by others, the internal toll on her mentally was no less painful. “Imagine trying to be normal and trying to act normal, but you feel like a bus is constantly hitting you, or you’re constantly being stabbed,” Dima says. “It does something to your psyche.” Throughout childhood, repeated hospitalizations, bouts of jaundice that turned her eyes yellow, and the inability to go swimming due to uncontrollable factors like weather caused Dima to feel excluded and different from other children. But she soon...