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September is Sickle Cell Awareness Month. Sickle cell disease (SCD) is a genetic disorder that impacts the shape of red blood cells. Normally, these cells are round and flexible. They flow easily through blood vessels. In people with SCD, the red blood cells take on an abnormally bent or “sickle” shape, which can lead to blocked blood flow.

Symptoms of SCD are diverse and severe, including anemia, acute pain crises, increased susceptibility to infections, and a high risk of stroke. Chronic damage to vital organs such as the lungs, kidneys, bones, and brain worsens the disease's severity, leading to a significantly diminished quality of life and a reduced life expectancy.

In the United States, SCD predominantly affects Black Americans, accounting for approximately 90% of the estimated 100,000 individuals living with the condition. Hispanic Americans represent nearly 10% of the SCD population, with a smaller proportion comprised of Mediterranean, Indian, and Middle Eastern people.

A person can be a carrier of the sickle cell trait but experience little to no symptoms throughout their lives. Being a carrier of the trait as opposed to having the disease does not mean that this person will not run any risks. Sickle cell disease is inherited from both parents.

Recognizing and addressing SCD healthcare inequities is part of the mission of Sickle Cell Awareness Corp. International. By prioritizing quality-improvement activities specific to SCD across our hospital system, we can ensure a comprehensive, systematic, and patient-centered approach to achieve these aims. The Sickle Cell Awareness Corp. International’s specific objectives are to enhance clinician knowledge, awareness, and understanding of SCD. This in turn can help with best practice management, which is of utmost importance. This can lead us to build an infrastructure and create a robust framework that guides clinicians in adhering to established best practices. Integrated community health workers and working with community-based organizations can also provide support.

We must also establish an SCD registry to bolster our quality improvement efforts and evaluate the impact of our interventions. This registry can allow for actionable reports at system, facility, patient, and provider levels, driving continuous improvement and effective patient panel management. We are committed to significantly reducing morbidity and mortality associated with SCD and enhancing the quality of life for those living with this complex, chronic disease.

Sickle Cell Disease Resources

Merlene Smith-Sotillo founded the Sickle Cell Awareness Corp. International in 2007 while learning about the disease that affects two of her four children. The not-for-profit organization is dedicated to bringing awareness, passion, continuing education, and support to individuals and families with Sickle Cell Disease. Smith-Sotillo is also active in other civic and charitable organizations, including the Cancer Action Council and NAACP.