At Riley Children’s Hospital, patients are channeling their experiences with sickle cell disease into a powerful art therapy project. Through this expression, they learn how sickle cells can be a tool for self-love and spread awareness.
The project allows patients, caregivers and families to write how sickle cell disease has affected them and their life on a sickle cell-shaped leaf which is then placed on a large painting of a tree. The painting was displayed in the lobby of Riley for the month of September in honor of Sickle Cell Awareness Month. For patients and families, seeing how others have grown from the disease can foster a sense of community for a painful disease.
Sickle cell disease is a group of red blood cell disorders that affects at least 100,000 people in the United States, according to Dr. Julia LaMotte, pediatric psychologist at Riley.
As LaMotte explains, a normal red blood cell is round and can easily move throughout the body. With sickle cells, the genetic mutation turns the blood cell into a sickle shape, causing them to get stuck at certain points in the body. Patients can experience severe pain as a result.
“While we think that about 1 in 400 African American babies have sickle cell here in Indiana, we know there’s about 1,700 individuals living with sickle cell from birth through late adulthood, which is a pretty notable number,” LaMotte said.
Sickle cell disease is more common in African Americans because it was formed to protect the body against malaria, a disease common in Africa. While there are treatments to ease pain and stop the progression, there is no cure.
Riley Children’s Hospital is at the forefront of research in this area.
“We are actively working to bring gene therapy here to Riley, which would be really exciting and would increase access for patients who may not be eligible for stem cell transplant,” LaMotte said.
The Riley Sickle Cell Program serves over 400 patients with the disease, but because the disease is uncommon, LaMotte says the patients can sometimes feel isolated.
“(The patients) might not ever meet somebody with sickle cell disease, so we wanted to create something that would help that feeling,” LaMotte said.
Katie Cline and Emily Slavich, art therapists at Riley, were directly involved with the project.
“Our goals with this project were to foster awareness, but largely foster a sense of community and belonging,” Cline said. “Fostering a visual collaborative art piece that helps bring community awareness and a sense of support was our large goal.”
Cline and Slavich are brainstorming how the project can be digitized or changed with the seasons to continue to help patients with art therapy.
“We’re able to use art making in the process of processing big feelings and emotions,” Slavich said. “Because we don’t bill, we’re able to see anyone in the family.”
While the clinic works to continue their research, LaMotte is proud of the work the art therapists have done to foster support for her patients in their time of uncertainty.
“When we approached Katie and Emily with this idea of wanting to create something, we weren’t sure what it was going to look like,” LaMotte said. “They took the idea and ran with it, and it’s just incredible.”
For more information about Riley and the work they’re doing, visit rileychildrens.org.
To read more health stories, click here.
This reporting is made possible by a grant from the Indianapolis African-American Quality of Life Initiative, empowering our community with essential health insights. https://iaaqli.org/
Contact Health & Environmental Reporter Hanna Rauworth at 317-762-7854 or follow her on Instagram at @hanna.rauworth.
Hanna Rauworth is the Health & Environmental Reporter for the Indianapolis Recorder Newspaper, where she covers topics at the intersection of public health, environmental issues, and community impact. With a commitment to storytelling that informs and empowers, she strives to highlight the challenges and solutions shaping the well-being of Indianapolis residents.
