Dr. Dora Clayton-Jones used to watch her brother play basketball, sprinting up and down the court alongside his high school teammates. What she didn’t see was what happened after the games: her brother would go to the bathroom and find blood in his urine.
“It was a sign of him not being hydrated enough during the game and it caused damage to his kidneys,” says Clayton-Jones, associate professor of nursing.
Her brother had sickle-cell trait, an inherited genetic condition in which a person carries one copy of the sickle cell disease gene. About 40 percent of his red blood cells contained abnormal hemoglobin that could “sickle” — or become a rigid, misshapen crescent rather than a flexible disc — under certain conditions, potentially leading to health complications. He experienced episodes of blood in his urine but didn’t understand why it was happening and didn’t communicate the issue, fearing that doctors might stop him from playing basketball.
It also contributed to her decision to start the IMPACT Lab.
“My brother’s experience and my time in hospitals have made me empathetic to what children going through chronic illness may be dealing with, and that’s what this lab is all about,” Clayton-Jones says.
The IMPACT Lab (Innovative Methods for Promoting Action, Community, and Transformation) is an interdisciplinary team of researchers focused on helping young people living with sickle cell disease build the capacity to care for themselves. The lab also promotes awareness and education around sickle-cell trait, empowering individuals like Clayton-Jones’ brother to better understand and manage their health. It is about giving young people agency over their lives, even when navigating the complexities of a chronic condition.
“They need to learn from a young age how to advocate for themselves,” says Dr. Lee Za Ong, an IMPACT Lab researcher and associate professor and director of predoctoral program in behavioral science in the School of Dentistry. “One of the things we can teach them is how to ask the right questions when they receive mental or behavioral health care, for instance. That way, they can be active in their own care.”
Research papers occupy part of the 13-person team’s time, but the group is also focused on communication resources and material interventions for teens with sickle cell disease. The most expansive of these interventions is called Eliminating Sickle Cell Disparities Among Youth: The POSSE Project. Funded by a $450,000 grant from the Betty Irene Moore Fellowship for Nurse Leaders and Innovators through the University of California-Davis, the POSSE Project brought teenagers suffering from sickle cell disease to Marquette’s campus for a one-week residential program each summer. During that week, they learned how to self-manage potential risk factors for sickle cell flare-ups, such as environmental temperature and emotional stress.
“I’ve always taken care of young people and been amazed by their resilience.”
Dr. Dora Clayton-Jones, associate professor of nursing
Sambhavi Patel, a Class of 2025 Marquette graduate with a Master of Science in bioinformatics, became familiar with sickle cell disease sufferers’ lives when she worked as a research assistant, and now a volunteer for the IMPACT Lab, serving as the main point of contact between participants and staff. She guided the participants through self-advocacy sessions in which youth were taught how to approach friends and loved ones about pain management. Sambhavi felt like she really got to know them by the end of the week.
“I sat with them during lunch hours and talked to them,” Patel says. “Despite everything they were going through, I found them to be quite focused on what they want to do in their future. It’s very difficult for them to cope through a pain episode but just seeing them so excited to go to college was a hopeful moment.”
Seeing the youth each summer is a good reminder of who the IMPACT Lab is meant to serve. It also harkens back to Clayton-Jones’ passion for youth empowerment, which started during her time as a volunteer in a hospital on the northwest side of Chicago. She saw her first sickle cell disease patient there, a preschooler who would go from smiling one minute to crying the next from the pain.
“I wanted to understand that more,” Clayton-Jones says. “I wanted to do something with my life that I was interested in. I’ve always taken care of young people and been amazed by their resilience.”
The IMPACT Lab debuted one of their most recent projects in August, a series of simulation videos titled “Leveling Up Through Video Simulation.” The series offers detailed, evidence-based instructions to sickle cell disease patients on navigating their symptoms and managing life with the condition. This was developed in partnership with a young adult advisory board and youth in the POSSE Project, proving the IMPACT Lab’s thesis that the best results come not from dictating to the patient population, but from partnering with them.
“We’re excited to see how patients’ perspectives can add to the research coming out of this lab in the years to come,” Ong says.
