How Misperceptions Can Create Barriers to Care

Sickle cell disease is the most common inherited blood disorder in the United States. People with the condition have sickle-shaped red blood cells and these misshaped cells can block the flow of blood and oxygen to organs throughout the body. These blockages can cause severe pain, organ damage, and strokes. While the disease is well understood, treatment options today are limited and obtaining proper care can be complicated by healthcare workers’ lack of understanding of the disease, racism, and a misconception that the condition only affects African Americans. We spoke to Marqus Valentine, co-founder of Sick Cells, and Doris Polanco, a member of the Sickle Cell Thalassemia Patients Network, about sickle cell disease, their experiences with the condition, and how ignorance about the disease affected their care.sickle cell diseasepatient advocacyrare disease