Standing Up for Sickle Cell Warriors

As a child of Nigerian immigrants, Stephanie Ibemere, Ph.D., has long had a desire to give back to her ancestral home. But it wasn’t until her doctoral studies at the University of Cincinnati, when she heard a guest speaker mention Nigeria’s struggles treating sickle cell disease (SCD), that she began to envision how. 

Sickle cell disease is a blood disorder in which red blood cells fold into sickle shapes, causing chronic anemia, severe pain and organ damage. Because possessing one copy of a sickle cell allele offers some protection against malaria, it is more prevalent in places where malaria is endemic. Nigeria has the most sickle cell cases of any country in the world, with about 150,000 babies born each year with the disease. Due to wide gaps in access to diagnosis and treatment, more than half of Nigerian children with the disease die before age five. 

“In learning more about the condition and realizing its connection to Nigeria, it became clear this was a place I could put my mind and hands to and finally give back to the country that gave so much to me and so many other places I care deeply about across the globe,” says Ibemere, an assistant professor at the Duke School of Nursing and an affiliate of the Duke Global Health Institute. 

Since 2022, Ibemere, a registered nurse, has been working to improve training for nurses and healthcare workers about sickle cell disease, which remains widely misunderstood even in places where it is most prevalent. Through a partnership with the International Association of Sickle Cell Nurses and Professional Associates , the University of Tennessee College of Nursing and St. Jude Children’s Research Hospital, she has organized boot camps in the U.S., Nigeria and Brazil where nurses and other frontline health workers learn strategies for managing sickle cell symptoms and supporting patients and families in living with the disease. Ibemere also led two training workshops during summer 2025 in Uganda, where DGHI professor Kearsley Stewart leads a research project on sickle cell treatment. 

As June 19 is World Sickle Cell Day, an observation created by the United Nations to raise awareness of the challenges people living with sickle cell disease face, we spoke with Ibemere about her work and what people, even healthcare workers, get wrong about the disease. The conversation has been edited for length and clarity. 

I've noticed when you talk about people living with sickle cell disease, you often use the phrase “sickle cell warriors.” What does that language signify?

This is a term of empowerment that comes from the sickle cell community groups I have worked with. Often we speak to the weaknesses of populations experiencing illness, and we can sometimes lose sight of their strengths. This is where person first language and theory come from. The term ”warrior” highlights the strength individuals living with SCD carry and sometimes must use to preserve themselves in a health system that is not always on the side of the warrior.  Because this is a warrior community, they have been pushing to change the need to endure through advocacy and policy work. 

What are some of the common misconceptions about sickle cell disease?

There are so many misconceptions about SCD. One that we need to be particularly careful about is the idea that someone in pain from a vaso-occlusive episode is seeking to misuse opioids. A healthcare provider might assume this because an SCD warrior will tend to know which medications help them, and they may not be crying, writhing or visibly exhibiting signs that fit our preconceptions of what being in pain looks like. They might be vocal about needing additional support when pain relief is ineffective. Another is the misconception that there is a specific lab test that can be done to prove someone is in a vaso-occlusive episode. This leads to delays in care and pain relief. 

Also, although the highest sickle hemoglobin frequencies are found in malaria endemic areas across the African continent, race is not associated with SCD or trait risk, and thus the presence or absence of SCD should not be determined based on this social construct. There is high prevalence of trait and SCD in India, Brasil, Costa Rica and Venezuela, and across multiple European countries like Italy, France, Spain and the United Kingdom. This means we need to be thinking also about how accessible our SCD care is to a multiethnic sickle cell warrior community.

It sounds like those misconceptions are pervasive even among healthcare workers. Is that the motivation behind the boot camps?

Gosh, yes, they certainly are. The idea that a person’s rating of their pain can’t be believed if they aren’t outwardly showing signs of pain is a serious issue. It is certainly part of the reason the boot camps came into being. We noted a clear lack of understanding in our discipline, and our goal was to address the gap in SCD training that we have experienced as nurses ourselves and had heard from our colleagues from around the world.   

Yvonne Carroll from St. Jude and Dr. Sara Day from UT Health were kind enough to bring together an Avengers style group of nursing experts to build out the bootcamp into what it has become today. It began as a professional development experience we offered in Memphis, but as visa restrictions made it more difficult for international nurses to come to the U.S., we took the show on the road. I have been lucky to be involved since the beginning and co-led (with Yvonne) the first SCD Nursing Bootcamp on the continent of Africa in June 2025 in Abuja, Nigeria.  It was really one of the greatest honors of my life. 

What happens at a boot camp? How do you help nurses learn more about sickle cell and patients’ experiences?

At all of our boot camps, we cover subjects like SCD pathophysiology, complications and treatments, as well as community health strategies, psycho-social support and global health implications. The highlight for all of us is the Warrior Panel where we all get to hear directly from sickle cell warriors about their experiences and their advice to our bootcamp participants. When we went to Nigeria, we tailored the experience to cover topics such as addressing misaligned parentage and stigma rooted in cultural misconceptions like obanje, witchcraft and other folklore related issues. 

Can you talk about the research you’re doing to show this model is working?

We decided to establish the efficacy of the bootcamp model during our time in Abuja. To do this, we used an embedded mixed methods design to adapt the bootcamp model to the clinical contexts of our nurses. We hosted an adaptation focus group with the aim of gathering data on what the nurses were encountering clinically, what they would like to learn, and how they would like to learn. These data informed the curriculum we used while on ground last year. Once on ground, we assessed pre and post knowledge and self-efficacy of all 35 nurses who were admitted and attended the bootcamp in Abuja. We have since published the first manuscript from this work which established that the bootcamp was in fact effective in increasing the nurse’s knowledge and their self-efficacy to manage the care of a sickle cell warrior. 

Where would you like to see this work go next?

We are always looking for funding to continue delivering the bootcamp in Memphis and internationally. Yvonne Carroll and I have been invited to support a large team in Vellore, India, with delivering the SCD Nursing Bootcamp to their network of over 160 hospitals. 

I recently received Bass Connections funding to continue my research lab’s work to develop context specific decision support tools, and a group of the nurses we trained in Abuja have volunteered to be part of our algorithm testing team! We are on our way to changing the way SCD is managed in Nigeria and in many other countries. This work is my passion and what we are doing in SCD can be applied to so many other conditions in terms of capacity building, health provider and systems strengthening, and implementation science.