A voice through research
How a neighbor inspired a nursing researcher to study sickle cell, pain and health disparities
By Fabiana Otero
When she was 16, Miriam O. Ezenwa’s 20-year-old neighbor died from sickle cell disease.
Ezenwa, Ph.D., R.N., grew up with her mom, dad and nine brothers and sisters in a poor and unsafe neighborhood in Nigeria. Ezenwa remembers her neighbor receiving monthly blood transfusions to reduce his risk of a stroke but he still suffered from something called sickle cell crisis, or severe attacks of pain. During these attacks, Ezenwa didn’t see her neighbor for weeks.
“Had his pain been properly managed with opioids and adjuvant pain medications, he would have had less frequent pain crises,” said Ezenwa, now an associate professor in the UF College of Nursing.
His experience sparked Ezenwa’s lifelong study of the disease. Sickle cell disease changes the shape of hemoglobin in red blood cells. Typically, according to the National Institutes of Health, hemoglobin is disc-shaped, allowing it to slip through different sizes of blood vessels to carry oxygen throughout the body. Instead, people with sickle cell disease have hemoglobin that contains stiff rods, potentially causing the cells to become stuck in blood vessels, leading to stroke or severe attacks of pain.
The disease develops in people from malaria-prone regions such as the Middle East, India, Mediterranean and Africa, and affects 100,000 people in the United States. One in 500 African Americans are born with the disease.
Ezenwa came to the United States in 1995 — on a diversity visa granted through a lottery developed to promote immigration from countries that have had low rates of immigration to the United States — and began studying nursing in New York. As a student she became interested in health disparities in pain management, particularly with health care injustice as a psychological stressor.
While working as a nursing student during her clinical rotations, Ezenwa saw that certain patients complained of more pain and requested more medication. Reading literature recommended by her clinical instructor, Ezenwa found evidence to support that African American and Hispanic patients were given less or no pain medication. Their pain was also underestimated by doctors compared with white patients with pain.
Her interest in health disparities in pain became the topic of her doctoral dissertation. Ezenwa found that the African Americans’ pain was poorly managed because of perceived discrimination, which led to hopelessness and a lack of self-advocating.
At University of Illinois at Chicago, Ezenwa started her research career as a sickle cell scholar funded by the National Heart, Lung, and Blood Institute’s Basic and Translational Research Program. Subsequently, as a tenure-track faculty member, she continued to focus on health disparities in pain management of patients with sickle cell disease. In addition, Ezenwa collaborated on cancer pain control in dying patients with research partner and principal investigator Diana J. Wilkie, Ph.D. Both Ezenwa and Wilkie came to UF. Ezenwa is a principal investigator and Wilkie a co-investigator in a guided relaxation intervention study to help sickle cell patients manage their pain and stress through an audiovisual exercise.
Now, Ezenwa and a team of sickle cell researchers are advocating for a more comprehensive sickle cell disease program. Their goal is to collaborate with doctors who have expertise in sickle cell disease to establish a dedicated clinic and unit for patients with sickle cell disease.
“The African Americans, they are my people,” Ezenwa said. “Their grandfathers, my ancestors, they were stolen from Africa, they were brought here as slaves and I see my connection with them.”
Ezenwa sees her win of the green card lottery as divine intervention that led her to what she calls the blessing of an American education.
“The least that I can do is … lend my voice through research and advocacy for them,” she said. “Not only for patients with sickle cell disease, but for all Africans and minorities in America who are suffering.”