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About the Disease

There are more than 100,000 individuals with sickle cell disease in the U.S. and many millions worldwide. Two million African-Americans are carriers of the disease, and it is also common in those of Carribbean ancestry. It has also been found in Latin America, the Mediterranean, the Middle East, and India.

Sickle cell disease is caused by a genetic mutation which turns normally soft, round red blood cells into stiff, sickle-shaped cells that frequently block small blood vessels, leading to debilitating pain, cumulative damage to body organs, and sometimes fatal strokes and heart attacks. About 15% of children with sickle cell require frequent blood transfusions to prevent stroke. People with the disease are easily fatigued and may suffer additional organ damage from oxygen deprivation, because there aren’t enough many normal red blood cells to carry oxygen to the body.

Living with sickle cell is a constant struggle, particularly for children, who endure extreme pain and chronic, potentially life-threatening infections. They find it hard to plan ahead or travel, knowing that at any time pain or fever could send them to the hospital as often as four times a year. Their suffering is compounded by the knowledge that the disease is often fatal in one’s 40s.

Despite the large numbers affected, most Americans have never heard of sickle cell disease. Consequently, research and treatment programs receive far less funding and attention than other pediatric illnesses. CHOP is committed to pushing forward sickle cell research and enhancing clinical care for these deserving children.