As a patient diagnosed with sickle cell disease, Damien Nevels brings his own experience to his new role as the first sickle cell transition intern at Barnes-Jewish Hospital. In this position, he will assist young patients and their families as they deal with challenges of the disease and the move to adult care from pediatric care at St. Louis Children's Hospital.
Nevels received treatment at St. Louis Children’s Hospital until he turned 18, five years ago. He was originally apprehensive about the move to Barnes-Jewish.
“Children’s is like family,” he says. “It’s like growing up in your parents’ house and not wanting to leave.”
Nevels, now 23, helps patients transition to adult care, while managing their illness and maintaining regular medical treatment, thus reducing reliance on emergency room care.
“The sickle cell community is tight-knit, and Damien is able to pass along his knowledge to patients and serve as a mentor,” says J. Evan Sadler, MD, PhD, who holds the Foundation’s Ira M. Lang Endowed Chair, director and professor of medicine, Division of Hematology at Washington University School of Medicine. “Just the fear of the unknown is an important barrier, and Damien is able to help them overcome that barrier.”
In the United States, sickle cell disease is the most common inherited blood disorder in people of African, Middle Eastern and Mediterranean descent. The condition impacts red blood cells and leads to chronic pain and fatigue, organ damage and reduced lifespans.
Studies on children with sickle cell disease have shown that early diagnosis and continued medical treatment can reduce symptoms, contribute to enhanced well-being and, ultimately, prolong life.
However, some young patients, who are used to the child-centered environment at a pediatric hospital, avoid getting regular care as an adult. According to a Washington University School of Medicine study of 3,200 sickle cell patients, emergency room visits tripled from age 15 to age 24. Nevels was almost one of them.
“I waited as long as I could to transition to adult care. I was thinking, ‘I’m healthy enough — maybe I can wing it,’” he says. “But my mother wouldn’t allow it.”
Those teens and young adults who do choose to “wing it” often end up seeking emergency room treatment when they suffer a pain crisis and they may end up waiting hours to be seen, says Victoria Faulkner, RN, BSN, Washington University hematology clinical nurse coordinator.
“One of the challenges is the misperception of these patients’ pain,” she says. “People have lived with it for so long they are able to function, masking their pain by using their cell phones or listening to music through headphones.
“But when they have to wait for a long period of time in the emergency room after suffering for so many hours, they often get angry and frustrated. This can affect their behavior toward medical staff, who may view them as difficult patients.”
Because Nevels' internship includes shadowing and interacting directly with health care professionals, he acts as an educator, helping medical staff to understand misperceptions they might have about sickle cell patients and their experience, and overcome any unconscious biases.
In his mentoring role, Nevels acts as a sounding board for young patients, listening to concerns that they might not feel comfortable expressing to adults. He introduces them to the hematology clinic at Barnes-Jewish, and gives them tips on managing pain and avoiding the triggers that cause it.
And a very big part of what he does is give patients and their families hope.
“I am touched by the younger patients who want to hear my story and to know that they can be healthy,” Nevels says. “If I can do it, they can too. They can learn from me and do it even better.”