Her story: At age 5, Lakiea Bailey experienced the first sickle cell crisis that landed her in a hospital, and since then she’s endured hundreds of hospitalizations, blood transfusions, and surgical procedures. Yet she went on to earn a bachelor’s degree in biochemistry and molecular biology, and a doctorate in molecular hematology and regenerative medicine. Now, in addition to numerous other volunteer efforts, she is director of a consortium of nonprofit organizations aimed at empowering SCD patients and their caregivers to have a leadership voice in research, policy advocacy, and education.
Her inspiration: “My mom has been a major influence on me. She insisted that I continue moving forward, that I be excellent at the things I do, that SCD not be an excuse. And she pushed me to make sure I was taking care of myself. When someone has such an unwavering belief in you, you can’t help but have that kind of faith in yourself.”
Biggest challenge: “On some days, I’d say dealing with fatigue is the toughest part, but then there are days when you lose people you care about to sickle cell, and those are the moments that just shatter everything. It’s devastating.”
What keeps her going: “I tell myself you don’t have to change today; just commit to changing tomorrow. Allow yourself to be broken, to give up, and then get over it by morning.”
Why she loves her work: “We reject learned helplessness. Instead we provide a platform to identify problems, but try not to look to others to fix them. We fix them. Our voice is powerful and it needs to be heard.”
What she wants people to know: “Sickle cell patients are just people. We are not drug seekers or the authors of the current opioid epidemic. We love and laugh and live, and I want people to see us three-dimensionally, as we really are.”
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