Sickle cell disease (SCD) is an inherited blood disorder that disproportionately affects Black populations. The disease causes red blood cells to change shape, leading to blockages in blood flow and episodes of severe pain. Black women with SCD often face additional health disparities, particularly when it comes to reproductive health.
Women living with SCD can experience complications such as menstruation-related pain, pregnancy crises, infection, stroke, and organ failure. Black women are three to four times more likely than others to die from prenatal complications. For those with SCD, the risk of death from reproductive challenges increases six to ten times.
Historically, there has been limited research on the intersection of SCD and reproductive health. The Ohio State University Sickle Cell Women and Girls (SWAG) Research Lab aims to address this gap by studying how the disease impacts women throughout their lives.
One participant in a previous SWAG Lab study described her pregnancy experience: “I have a strike against me as a Black person, another strike as a woman,” she said. “And then, sickle cell and the burden and mistreatment during labor and delivery.” She reported that contractions led to her baby’s birth but ongoing pain from SCD continued after delivery.
Shameka Thomas, PhD, MA, founder of the SWAG Lab at Ohio State University College of Medicine, noted that these experiences are common among pregnant patients with SCD. “Those who are pregnant with SCD often experience pre-term labor, the need for blood transfusions, and pregnancy loss.”
Dr. Thomas is working to increase awareness within the medical community about these challenges and advocates for an integrated approach to care. “We need to focus on the patient’s experience because it reiterates that their experiences of delayed menstrual cycles, preterm labor, low birth weight, gestational diabetes and even maternal and infant death play a part in the improvement of disease management altogether,” Dr. Thomas said. “I want our efforts to show that just because you live with sickle cell doesn’t mean you’re defined by it.”
Her research also explores noninvasive prenatal testing for SCD screening involving 45 women and adolescent girls who receive access to reproductive health resources and ongoing support. This work helps clinicians better understand how genetic conditions like SCD affect care during pregnancy.
“SWAG’s guiding premise is to give participants the chance to share what it’s like for them to live with SCD day-to-day,” Dr. Thomas said. “And it gives providers the chance to understand SCD lived experiences beyond the repercussions of their symptoms.”
Sherraine Della-Moretta, MD at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute — influenced by her own experience with an inherited blood disorder — emphasized prompt management for patients experiencing pain due to SCD: “When a SCD patient has pain I immediately address management, pain relief fluid intake and even possible blood transfusions,” she said. Dr. Della-Moretta highlighted how menstruation-induced pain interacts with hormonal contraceptives in affecting acute care needs for women with SCD.
Another patient shared concerns about limited knowledge among providers regarding both genetics and maternal health: while under care from a physician familiar with SCD during her pregnancy she received little guidance beyond increased monitoring appointments.
“Centering Black women’s reproductive health narratives – those with and without genetic conditions – requires including their experiences so we can develop deeper understanding and respect for the reproductive autonomy of all women,” Dr. Thomas said.
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