Today is the international awareness day is observed annually in an attempt to increase public knowledge and an understanding of sickle cell disease, while educating those who may not know enough about the struggles experienced by patients and their families and caregivers. Sickle cell disease patients have red blood cells that are hard, sticky and C-shaped (like the farm tool, a “sickle), and the potentially-fatal rare genetic condition affects an estimated 95,000 Americans – both adults and children.
While African Americans may be most likely to have sickle cell, they are least likely to participate in the clinical trials that could help find a cure. According to the FDA, African Americans comprise 14 percent of the U.S. population, but only five percent of clinical trial participants.
One in 365 black American’s have the disorder, and approximately one in 13 blacks are carriers of sickle cell trait.
The misshapen sickle cells clog smaller blood vessels, result in excruciating pain and put patients at an increased risk for infection acute chest syndrome and stroke. Sickle cell disease has been a focus for Rare Disease Report throughout the years, and the resources below are sure to be helpful to patients, caregivers and advocates.