A Patient Advocate’s Take on Sickle Cell Disease: The Pain and the Promise | oneSCDvoice
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A Patient Advocate’s Take on Sickle Cell Disease: The Pain and the Promise


September is National Sickle Cell Awareness Month. First officially recognized by the federal government in 1983, National Sickle Cell Awareness Month calls attention to sickle cell disease (SCD), a genetic disease that researchers estimate affects between 90,000 and 100,000 Americans. CIRM is funding a clinical trial focused on curing the disease with a stem cell-based gene therapy.

People with this debilitating condition face a number of barriers in getting the help they need to keep their pain under control. In addition to the difficulty of accessing medication, they often have to overcome suspicion and discrimination. Patient Advocate Nancy Rene, of Axis Advocacy wrote the following blog about the problems families with SCD face.