According to the National Institute of Health, sickle cell disease (SCD) — also called sickle cell anemia — is a group of inherited disorders that cause red blood cells to be misshaped, typically crescent or “sickle”-shaped due to a gene mutation. When that happens, the cells can block blood flow to the rest of the body, causing an often painful, disruptive, and potentially fatal condition.
Despite affecting nearly 100,000 Americans, SCD is classified as an orphan disease, defined as a condition that strikes fewer than 200,000 people. As a result, it often receives less attention, but behind every diagnosis is a family navigating the harsh realities of a terrible disease. That needs to change.