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Rare patients with sickle cell disease live nearly twice national average

With a national median life expectancy of 42-47 years, people with sickle cell disease (SCD) face many challenges, including severe pain episodes, stroke, and organ damage. Compounding these complications is that SCD—an inherited, lifelong blood disorder characterized by rigid and sickle-shaped red blood cells that stick to the blood vessels, blocking blood flow—has only one FDA-approved treatment, no widely available cure, and some people may have limited access to appropriate care.
However, a new report published online today in Blood, the Journal of the American Society of Hematology (ASH), shows that some people with mildly symptomatic SCD may live long lives with proper management of the disease, including strong family support and strict adherence to medication and appointments. This analysis of four case studies details the outcomes of four women with milder forms of SCD who have far surpassed the U.S. median of 47 years old for women with the disease, instead living as long as 86 years.