Sickle cell disease (SCD) affects millions of people worldwide, but the daily challenges that come with the condition often go unseen. Through her work with the School of Behavioral Health and the School of Nursing, Carlene Fider, PhD, reminds us that behind every statistic are individuals whose courage and resilience demonstrate why we call them sickle cell “warriors.”
Dr. Fider is a two-time graduate of Loma Linda University’s School of Behavioral Health, laying the foundation for her belief that science and compassion belong in the same conversation. Her work with the two schools brings that belief to life, bridging research, education, and community through programs that empower individuals living with sickle cell disease (SCD) and sickle cell trait (SCT).
Spreading Sickle Cell Disease Awareness and Advancing Research
Together with Professor Lisa Roberts, DrPH, Fider helped develop the Sickle Cell Warrior Superhero Art Competition, a community contest that invites warriors to share their experiences through art.
The art competition is part of a larger effort supported by a $2.2 million Health Resources and Services Administration (HRSA) grant awarded to Loma Linda University Health in 2023. The grant’s goal is to improve care, quality of life, and awareness for youth and young adults with SCD, and to reduce maternal health disparities for those living with or carrying the trait.
At its core, this event embodies the grant’s spirit of care and empowerment. By transforming pain into creative storytelling, participants help the broader community understand the challenges and triumphs of living with sickle cell disease.
“The art competition does more than showcase talent. It gives warriors a voice to express the physical and mental complexities of navigating life with SCD,” Fider said.
And why superheroes? Fider explains that the metaphor fits perfectly.
“Superheroes often come from places of pain or isolation,” Fider said. “Our warriors are the same. And to help us understand their experience, they can create an image of a superhero based on their lived life.”
The first round of this event occurred on September 30, where the community came together to learn about sickle cell, start conversations, and learn how to draw superheroes from local artists.
Submissions for the contest will end on December 31, with a second event held in mid-January to announce winners, display submissions, and keep the SCD conversation going.
The art competition serves as an extraordinary example of interdisciplinary collaboration between the School of Behavioral Health and the School of Nursing. By integrating clinical and maternal health research with family studies and community engagement, the initiative highlights how combined efforts can improve how we care for sickle cell warriors.
Sickle Cell Disease and Family Health
Beyond the art competition, Roberts and Fider continue to use the grant to weave together research, education, and community engagement in a way that creates positive impact in our community. They work together to support research on sickle cell disease, with an especially powerful focus on helping educate young adults about SCD and reproductive health.
When it comes to SCD, trait, and having children, public knowledge remains limited. The two researchers want to give people the information they need to start families in an informed and responsible way.
“Sometimes medical teams, with good intentions, discourage people with sickle cell disease from becoming pregnant,” Fider said. “But we can do better. We can support them through those decisions with compassion and information.”
For Dr. Fider, awareness is a form of empowerment. This is especially true for those living with trait, who often don’t know they’re a carrier.
“Being aware of [your] sickle cell trait status can be empowering. It gives you information to make informed decisions about your future and your family,” she said.
Through research, art, and advocacy, Dr. Fider and her colleagues are redefining how care, compassion, and awareness intersect.
“The more we talk about [sickle cell], the less stigma we’ll have surrounding it.” she said. “When people are informed and surrounded by compassion, they can live their very best lives.”