Dr. Lakiea Bailey, a Passionate Survivor of Sickle Cell, Joins Fight for Cures

August 25, 2014

I am Dr. Lakiea Bailey, research scientist, sickle cell disease patient, patient advocate and activist.

Diagnosed with sickle cell disease at age three, I am a passionate advocate for those living with rare diseases and am committed to serving as a voice of encouragement within the sickle cell community. Obtaining a diagnosis was an uphill battle for my mother. I was born in the late ‘70’s, prior to widespread newborn screening, when trait-related symptoms were dismissed as simply having “weak blood.”

Neither of my parents had ever heard of sickle cell and were unaware that they each carried the trait, or what that could mean for future offspring. It took months of my mother actively seeking an explanation for my constant pain, multiple trips to different doctors and a consultation at a specialty pediatric hospital, before she found a physician that would take her concerns seriously.

Prior to finding the doctor that would eventually provide a diagnosis, my mother’s concerns were dismissed as an overprotective parent. She was even accused of exhibiting Munchausen’s behavior, of intentionally making me ill for the attention.

It was her unyielding insistence that something was very wrong, before my mother finally found a doctor who would listen and even then, my mother was told that it wasn’t a big deal and that I’d probably never experience any negative side effects. They were wrong.

I experienced my first sickle crisis requiring hospitalization at age 5. Since then I’ve endured hundreds of hospitalizations, blood transfusions and surgical procedures. There’s currently no widely accessible cure for sickle cell. Advances in bone marrow transplant and gene therapy has altered the landscape of sickle cell suggesting a cure is on the horizon giving us hope for a brighter tomorrow.

Despite the devastating symptoms of sickle cell, I was determined to complete my educational goals, earning a Bachelor’s degree in Biochemistry and Molecular Biology in 2001 and a Doctorate degree in Molecular Hematology and Regenerative Medicine in 2012. During this time I was named a Southern Regional Education Board (SREB) Doctoral Scholar, was the recipient of multiple honors and awards, including the Fisher Scientific Award for Overall Excellence in Biomedical Research, the Medical College of Georgia Alumni Association Award, the Georgia Reagents University Leadership Award and was inducted in the Alpha Upsilon Phi honor society. I believe that through hard work, diligence, patience and faith, even the seemingly most impossible obstacles can be overcome.

I recognize that success is due to the strength and commitment of many amazing advocates and supporters in my life and I am determined to provide the same support and encouragement to others in the sickle cell community. I am committed to serving as a resource for the sickle cell patient population as an advocate, educator, mentor and public speaker. I am currently the Director of the Sickle Cell Community Consortium, a unified collaboration of multiple sickle cell disease community-based organizations, the Vice President and Director of Research for Sickle Cell Warriors, Inc., sit on the Research Advisory Board for the Foundation of Sickle Cell Disease Research and serve as a member of the board of directors or science advisor for multiple other sickle cell related community-based organizations. The road from diagnosis to sickle cell advocate and activist was long and tumultuous. Yet with persistence, diligence and prayer, goals can be achieved and dreams can come true.

Dr. Bailey enjoys traveling across the nation promoting sickle cell awareness and education and is available for sickle cell and health-related community events, conferences and seminars. Her goal is to continue to influence sickle cell disease-related biomedical research as well as social and medical policy and to travel around the country, and the world, advocating for those living with this disease.

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