I Tried Gene Therapy—and Haven’t Needed a Blood Transfusion Since!

Photo: Lyric Porter Sickle cell disease (SCD) has long been a significant health challenge in the Black American community, disproportionately affecting individuals of African descent. This inherited blood disorder alters the shape of red blood cells, leading to painful episodes, organ damage, and a host of complications that severely impact the lives of those diagnosed. For many sickle cell warriors, the challenges of living with SCD are deeply personal and relentless, as the condition presents not only physical hardships but also emotional and social burdens. Early Life and Sickle Cell Diagnosis Lyric Porter’s battle with sickle cell began almost immediately after birth. Diagnosed through newborn screening, she was identified as having SS sickle cell disease, the most severe type. Her early childhood was fraught with complications, including a 14-day fever when she was just five, which left her with scar tissue in her lungs. This led to her requiring an oxygen tank in kindergarten—a sobering reality for such a young child. Throughout her childhood, Porter endured frequent health crises, including gallstones and recurrent acute chest syndrome, a life-threatening complication of SCD. From her preteen to teenage years, Porter needed transfusions every three to four weeks. Despite this, she recognizes that...