One of Audrey Patricia Smith's early defining memories of sickle cell disease was in Myrtle Beach, South Carolina, in 1959, when she was 12 years old and visiting the ocean with family friends. Before then, Smith had not yet experienced a pain crisis.
"I got in that water, and that was it," says Smith. "That was the beginning."
Sickle cell disease (SCD) is a chronic inherited blood disorder that causes red blood cells to form a crescent shape instead of a round disc. These misshapen cells can restrict blood flow, leading to severe pain, anemia, organ damage and other complications. About 100,000 people in the United States live with SCD. The median age at death for adults with SCD remains in the mid-to-late 40s, and many people with the disease do not receive recommended health screenings and treatments due to a lack of access to clinicians and healthcare systems with SCD expertise.