Who would have known that the earth is indeed not flat had it not been for scientific inquiry? Who would have known that billions of other planets exist outside of our solar system are being discovered that are light years away? Who would have known that cholera wasn’t caused by bad air? And who would have known that patients with sickle cell trait could actually display symptoms of sickle cell crisis under certain conditions? 

In honor of World Sickle Cell Day on June 19th, even if you do not completely understand someone’s disease or circumstances, going forth with kindness, empathy, and a desire to learn as nurses who could possibly provide care to such patients is critical. 

According to the American Society of Hematology (2025), “Unlike sickle cell disease, a serious illness in which patients have two genes that cause the production of abnormal hemoglobin (the substance in red blood cells that helps carry oxygen), individuals with sickle cell trait carry only one defective gene and typically live normal lives. Rarely, extreme conditions such as severe dehydration and high-intensity physical activity can lead to serious health issues, including sudden death, for individuals with sickle cell trait” (p.1). While the hallmark symptom is pain that is often described as complex, intense and variable (Collins et al., 2022), barriers to care include damaging stigmas, societal misconceptions and ethnic bias which can contribute to patient disbelief and provider mistrust in rendering care. This leads to improper and inadequate pain management as providers are overly cautious and confuse sickle cell pain with “drug seeking behavior” (Bulgin et al., 2023).

Florida has the highest number of reported sickle cell disease (SCD) cases in the nation (Fu, Andemariam, & Herman, 2023). Florida’s SCD prevalence with Florida Medicaid data shows a rate twice as high than that of the national average (Florida Agency for Healthcare Administration, 2023) and despite advancements, remains a significant health burden on the state’s healthcare system further highlighting the need for improved access, resources, and policies. The life expectancy of people with SCD in the United States is significantly lower than the general population, with an average of 52.6 years for Medicare and Medicaid beneficiaries compared to 76 years for those without the condition (Joao et al., 2023). We of course have experienced this first-hand as a mother, leader in the community, and an emergency room nurse of over 30 years died at 60 years of age when it was mistaken that she had the trait (which was shrugged off in the emergency room) when in fact she had the disease. So this June and every month after, go forth with kindness, empathy, and a desire to learn more about illnesses that you may not entirely understand and accept that science is constantly changing; what you may not know now might be something that is life altering for someone’s care in the future.

Biography : The Hyacinth Scarlett Foundation (HSF) is a non-profit 501(c)(3) organization committed to serving communities. Founded in honor of Hyacinth Scarlett who was a Florida registered nurse who died of sickle cell disease in 2021, the Foundation’s mission is to continue Hyacinth’s legacy through charitable programs that sustain her lifelong commitment to underserved communities, and the advancement of music and health (particularly in nursing) education. Submitted with permission on behalf of the HSF Board of Directors by the HSF Board Chairman and FNA member Marie Smith-East, PhD, DNP, PMHNP-BC.

References

American Society of Hematology (2025). Sickle cell trait. Retrieved from https://www.hematology.org/education/patients/anemia/sickle-cell-trait

Bulgin, D., Asnani, M., Vorderstrasse, A., Royal, C., Pan, W., & Tanabe, P. (2023). Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States. Psychology, Health & Medicine, 28(5), 1133-1147.

Collins, P. J., Renedo, A., & Marston, C. A. (2022). Communicating and understanding pain: Limitations of pain scales for patients with sickle cell disorder and other painful conditions. Journal of Health Psychology, 27(1), 103-118.

Florida Agency for Healthcare Administration (2023). Florida Medicaid: Study of enrollees with sickle cell disease. Retrieved from https://ahca.myflorida.com/content/download/20771/file/Florida_Medicaid_Study_of_Enrollees_with_Sickle_Cell_Disease.pdf

Fu, Y., Andemariam, B., & Herman, C. (2023). Estimating sickle cell disease prevalence by state: A model using US-born and foreign-born state-specific population data. Blood, 142, 3900.