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Stigma and Sickle Cell


One of the first things nurses learn about pain is that it is “whatever the person experiencing it says it is.” Yet when individuals with sickle cell disease (SCD) report severe pain, they are frequently met with disbelief and their pain is often inadequately managed. Also, most individuals with SCD are black (though the disease can affect any race or ethnicity) and many report experiencing discrimination during such interactions. In fact, race-based discrimination for patients with this disease contributes to negative provider attitudes, longer emergency department (ED) wait times, insufficient treatment, and lack of research funding.

SCD describes a group of inherited blood disorders that often cause hard, sticky, and sickle or C-shaped red blood cells. It affects 90,000-100,000 Americans and millions globally. The most prevalent clinical complication of SCD is sickle cell crisis, an episode of severe, acute pain caused by occlusion of small blood vessels by the sickle-shaped cells. These account for approximately 230,000 ED visits and over $1.5 billion in health expenditures annually.