Ryan Cooper knows firsthand how tough it is to be a teenager with sickle cell disease, a genetic blood disorder that can cause intense pain and organ damage.
“Adolescence is already hard enough, and then you are adding a layer of having a chronic illness on top of it,” Cooper says.
For more than 15 years, Cooper has received care for sickle cell disease at UI Health. As a teen and college student, he received guidance from UI Health’s Sickle Cell Transition Adolescent-Adult Readiness (S.T.A.R.) Clinic, a unique program for young patients with the disease. Now, Cooper works at the clinic as a peer patient advocate, helping patients navigate the transition from pediatric to adult sickle cell care, just as he did.
“I give an illustration of what the disease looks like as someone who is almost 30 years old,” Cooper says. He shows that young people with sickle cell disease can grow into thriving adults.
“I was once a child in this space before.”
Living with sickle cell
Sickle cell disease is caused by abnormal hemoglobin, the protein in red blood cells that carries oxygen throughout the body.
Unlike healthy, round blood cells that bend and move, sickled cells are stiff and can become lodged in blood vessels, preventing oxygen from reaching organs and tissues, and causing debilitating pain. Life-threatening complications can occur, including stroke, chronic episodes of reduced oxygen delivery to the brain, and high blood pressure in the lungs.
Today, cures are available for some people through stem cell transplantation or gene therapies. But many patients manage the condition into adulthood with medication and preventative care.
UI Health is home to the largest sickle cell program in Illinois.
“We used to think of it as a childhood illness,” says Paige Reilly, M.D., UIC professor of pediatric hematology-oncology in the College of Medicine and director of the S.T.A.R. Clinic. “But we’ve implemented a lot of very successful public health interventions to improve outcomes for kids with sickle cell disease, and now in the United States, basically 100% of kids with sickle cell disease survive to adulthood.”
Supporting transition
However, there’s still a challenge with what Reilly calls “the adolescent cliff.”
When patients switch from pediatric to adult providers after years of pediatric care, they lose safety nets and support.
“This is also an age where the cumulative burden of the disease itself starts to make itself more present,” Reilly says. “They’re dealing with a kind of shift in their disease that is quite jarring.”
The S.T.A.R. Clinic helps patients make this transition. Located in UI Health’s Adult Sickle Cell Clinic — to help familiarize patients with the adult setting — the S.T.A.R. team of providers and peer patient advocates educates young patients about their diagnosis and empowers them to take charge of their own health care.
It’s the only program of its kind in Chicago.
Each patient’s disease is different, and so are their needs and the ways peer patient advocates help them. Sometimes that means calling a patient to make sure they picked up a prescription. Other times, it means helping a patient fill out a job application. The advocates also help pair adolescent patients with adult health care providers and accompany them to their first appointments in the adult clinic.
“Not only are we helping patients in their health care, but we’re helping them learn how to navigate sickle cell disease in adult life,” says Ronisha Edwards-Elliott, a peer patient advocate at the clinic.
As an undergraduate student at UIC, Edwards-Elliott did not tell anyone she had sickle cell disease until she had a nearly fatal health crisis. The sickle cell care providers and social workers at UI Health helped her get her health and education back on track. After graduating in 2015, she joined the team.
Hope and trust
Part of the role of advocate, Edwards-Elliott says, is to build trust between young patients and the medical system so they can maintain their well-being.
“One reason why there is a lack of trust is because patients feel siloed and alone in healthcare,” she says. “We primarily build trust by putting titles aside, putting our credentials aside, and just letting them know that we understand what you’re experiencing because we once experienced it as well.”
Cooper agrees. “I just try to keep it one hundred with all the patients,” he says.
Elizabeth Ford said her experience at the S.T.A.R. Clinic as both a patient and a peer patient advocate inspired her to study medicine at UIC. Her work with the clinic also has validated her own struggles with sickle cell disease, she says.
“A year or two ago, I talked to a patient who had just entered their teens, and they were really struggling to imagine a future, something I myself dealt with at that age,” Ford says.
She told the patient how she flourished despite those feelings. “I gave them hope that this disease didn’t mean they couldn’t have the things they wanted in this life.”
