UAMS Adult Sickle Cell Program Announces Support Group, New Director
| The University of Arkansas for Medical Sciences’ (UAMS) Adult Sickle Cell Program celebrated World Sickle Cell Awareness Day on June 19 by announcing a support group for adult patients with sickle cell disease, as well as a new director.
During a free information session held on the 10th floor of the UAMS Winthrop P. Rockefeller Cancer Institute in Little Rock, the event drew around 50 visitors, who met with nonprofits, vendors and patients with the disease.
Marketa Brown (center), shown here with children Ameenah Wilson (left) and MaKaria Williams (right), was one of several patients with sickle cell disease who attended the event.Benjamin Waldrum
Sickle cell disease is a group of inherited red blood cell disorders where the red blood cells become hard and sticky, resulting in a C-shape or “sickle.” When sickle cells travel to small blood vessels, they get trapped and block blood flow to the area. This results in pain and may lead to other problems such as infection, acute chest syndrome and stroke.
Approximately 100,000 Americans are affected by sickle cell disease, according to the Centers for Disease Control and Prevention. About 60% of those are adults. There are more than 1,000 Arkansans with sickle cell disease, with roughly 20 new cases detected each year.
Stella Bowers, RN, a coordinator for the program, announced that the program would have a new director, Sravani Gundarlapalli, M.D., beginning in July. She also announced the creation of a new support group called Excelling with Sickle Cell, for adult patients and their caregivers.
Gundarlapalli, an assistant professor of hematology and oncology in the UAMS College of Medicine’s Division of Hematology and Oncology, earned her medical degree from Kurnool Medical School in India and served her internal medicine residency at St. Joseph’s Mercy Oakland Hospital in Pontiac, Michigan. She joined UAMS in 2020, where she also completed her fellowship in hematology and oncology.
Planning for the Excelling with Sickle Cell support group had been underway for some time, Bowers said. The group is designed to help patients better care for themselves and advocate for greater awareness.
“They need to be taught how to fight for themselves,” Bowers said. “That’s something you’re not born with — it’s something you have to learn. We have to go to legislators to fight for what we want. That takes skill, and that takes training. With this support group, we hope we are building future leaders for the sickle cell community.”
Sickle cell disease is an inherited condition, so patients begin seeking care as children and do not transition to adult care until they’re between ages 18 and 21. Advocating for better care often falls to the parent, which can lead to a knowledge gap for the now-adult patients, Bowers said.
Bowers herself has a child with the disease, and said she understands the difficulties.
The event drew around 50 visitors, who met with nonprofits, vendors and patients with the disease.Benjamin Waldrum
“A lot of the responsibility of care and advocacy is through the parent,” she said. “It is up to the parent to bring that knowledge to their child’s attention. A lot of sickle cell children are sheltered by their parents, so they don’t learn the advocacy part. They don’t learn the ‘I’ve got to stand up for myself’ thing because they’ve got their parents who are always fighting for them.”
The group’s first session was held July 7 at 5 p.m. in the Barlogie Conference Room on the 10th floor of the Winthrop P. Rockefeller Cancer Institute. There will also be a virtual meeting option available. For more information, contact sicklecellsupport@uams.edu. Subsequent meetings will be held at the same time and location on the first Monday of each month.
The UAMS Adult Sickle Cell Program was established in 2014 with support from the Arkansas Legislature, Medicaid and the Arkansas Minority Health Commission. Since then, the program has helped treat hundreds of patients and families. It collaborates with the pediatric Sickle Cell Disease Program at Arkansas Children’s and often receives patients when they age out of the program. Overall, the UAMS program cares for more than 250 patients across the state.
The sickle cell clinic is located on the seventh floor of the Winthrop P. Rockefeller Cancer Institute. For more information or to schedule an appointment, call 1-855-SIC-CELL (1-855-742-2355).