Left to right: Bianca Matthews, Temi Alo photo by Ryan Wilson IWK
On World Sickle Cell Disease Day, we recognize the resilience of children and families living with sickle cell disease (SCD) and highlight innovative approaches that are helping improve understanding, confidence, and care.
One such initiative at IWK Health is The CELLFiE Project, a patient-centred experience that gives children and families a unique opportunity to learn more about sickle cell disease through hands-on exploration and personalized education.
Bringing Science to Life
The CELLFiE Project allows children and families to step behind the scenes of the laboratory and gain a deeper understanding of their health condition. During the tour, participants view their own blood under a microscope, attend a child- and youth-friendly educational session, and explore the main IWK Health laboratory.
For children living with SCD, this means seeing their own sickled blood cells under the microscope and learning about disease-specific management strategies, including approaches to managing pain. Participants also complete questionnaires before and after the tour to help researchers understand how the experience affects their confidence in managing SCD-related pain.
Temi Alo, 13, recently had her personalized tour. She went into the CELLFiE visit with a good amount of knowledge about her condition but did find it helpful and learned even more.
“I know in the future how to deal with my sickle cell better. I know to drink more fluids to stay hydrated and how my taking folic acid helps with my treatment,” she said.
To commemorate the experience, Temi received a lab coat and stuffies of normal and sickled red blood cells. Each participant receives these items to take home, some of the stuffies are hand-made by lab staff and community volunteers.
Building Confidence and Understanding
For many families, the tour provides answers to questions they have long carried and helps make complex medical information more accessible.
Bianca Matthews is a Clinical Psychology PhD student at Dalhousie University conducting a dissertation focused on Black health equity in the context of pediatric pain. She also serves as a sub-Investigator for The CELLFiE Project, helping guide patients through the CELLFiE lab tour and evaluating changes in SCD pain-management self-efficacy.
"So far, we have heard youth saying that they finally feel like they understand what is happening in their bodies," says Matthews. "Parents have also shared that they feel more confident in their ability to help their child manage their sickle cell disease."
The team hopes these educational experiences will strengthen confidence, coping skills, and self-management among families affected by SCD while helping inform future approaches to pediatric sickle cell care.
Temi’s dad Tunmise Alo joined her on her recent tour of the lab.
“It’s opened my eyes to some things I didn’t know before like how the drug that she’s taking works, how it can reduce the number of sickle cells in her blood,” he said.
Lessons Beyond the Laboratory
The impact of The CELLFiE Project extends beyond the participating families. For Matthews, the experience has reinforced the importance of patient-centred care and meaningful communication.
"Witnessing The CELLFiE Project's individualized educational approach had a profound impact on me," she says. "Seeing how it boosts youth confidence, brings smiles to their faces, and reassures parents about their ability to support their child's future reinforced for me just how important it is to tailor interventions to each patient's specific situation."
The experience also highlighted the power of education as a therapeutic tool.
"Something as straightforward as sitting with a patient, ensuring they truly understand what is being communicated, and creating space for their questions can be transformative for their empowerment and overall well-being," Matthews says. "The CELLFiE Project reminded me that a therapeutic intervention doesn't have to be complex; sometimes its greatest power lies simply in making someone feel heard and informed."
Recognizing World Sickle Cell Disease Day
On World Sickle Cell Disease Day, IWK Health joins communities around the world in raising awareness of SCD and celebrating the strength of those living with it. Through initiatives like The CELLFiE Project, patients and families are gaining knowledge, confidence, and a deeper understanding of their health—one microscope slide, one question, and one conversation at a time.