A Voice for Sickle Cell Disease
Adults are living longer with sickle cell disease, but providers often lack the knowledge and training to appropriately care for them. In the U.S., an estimated 70,000-100,000 people live with sickle cell anemia, the most severe form of the inherited blood disorder that causes a person’s red blood cells to change shape and impedes proper blood flow, according to the National Heart, Lung, and Blood Institute (NHLBI).
In this video, Mandy David, a certified physician assistant and senior communications specialist at AIR, talks about issues that adult patients face as she evaluates and treats them at the Johns Hopkins Sickle Cell Center for Adults, which she managed for six years. She currently treats patients at the center on Mondays and works at AIR on national sickle cell issues Tuesday through Friday.
AIR works in a variety of ways to increase scientific understanding of the needs of adults with sickle cell disease. Currently, AIR is assisting NHLBI as they create the first systematically-reviewed, evidence-based guidelines aimed at U.S. primary care providers and prepare to disseminate and implement them. AIR has also used qualitative and quantitative research to better understand the quality-of-life issues that adults with sickle cell disease face.