Her story: Sakiyya Burwell-Darden was a teenager before she was diagnosed with sickle cell disease (SCD), even though she says her mother “knew something was wrong” long before then. She was frequently sick, yet Burwell-Darden went on to lead a full life—she went to college, got married, had three children, and spent numerous hours volunteering at schools, at her church, and later at SCANJ, where she now works full time raising awareness and facilitating support groups for others with the disease.
Unimaginable hurdle: In 2008, while she was sleeping, her husband woke and heard her struggling to breathe. He rushed her, unconscious, to the hospital, where doctors discovered a devastating blood clot in her lung. “They told him it wasn’t looking good. It was just the worst, but I hung in there. I didn’t see my kids for a month and a half.”
Aha moment: “When I finally came home, I just decided that I was here for a purpose. I wasn’t supposed to be here, but I am.”
Her motivator: “My mom felt guilty about not getting me diagnosed earlier, but she just didn’t know what questions to ask. That’s why I feel so strongly about educating people. I go out and tell them about resources, about how to manage the disease. But when I facilitate support groups, I often learn a better way to manage my own disease. They don’t realize how much they’re helping me.”
Her dream: “I’m already living my dream. I love what I do. I have a family I love, a place of work I love, and I am surrounded by people I love and who inspire me every day.” Other than finding a universal cure for sickle cell, “there’s nothing better.”