Patient stories: How sickle cell disease impacts every branch of my life

“My name is Alvonte Pyles, and I am 30 years old. I was diagnosed with sickle cell disease when I was two. Sickle cell has impacted every branch of my life.”

Sickle cell disease, sometimes called sickle cell anemia, is an inherited blood disorder where normally disc-shaped red blood cells instead are misshapen, resembling crescent moons or ‘sickles’ in shape. These blood cells cannot move easily through the body, often blocking blood flow and raising the risk of complications like stroke, problems with vision, kidney disease and more.

“You never know when it’s going to hit,” Pyles said. “Sometimes it feels like stabbing, like somebody is constantly stabbing at you.” Pyles was lucky to find the care he needed. He has grown up receiving care by the sickle cell experts at Prisma Health. Prisma Health’s program is unique in that it provides care for those living with sickle cell disease across the age spectrum.

“One main challenge is unexpected pain crises,” said Alvonte. “You never know when it’s going to hit. You’ll be good in the morning and when the afternoon comes around, be in the emergency room. You never know. Sometimes it feels like stabbing, like somebody is constantly stabbing you.”

Pediatric hematology oncology specialist Alan Anderson, MD, noted that Alvonte, a lifelong Greenville resident, has been treated by Prisma Health’s pediatric sickle cell disease program since he was a child. “Alvonte Pyles grew up with us,” said Dr. Anderson. “Our pediatric sickle cell program has been in place for over 35 years, providing excellent care for children like Alvonte. When we started our lifespan program in 2017, allowing us to continue treating our sickle cell patients as they grew into adults, Alvonte came straight away and said this was something he wanted to be a part of.”

The Prisma Health Sickle Cell Lifespan Center is unique in the fact that it provides care for those living with sickle cell disease across the age spectrum. “This is one of the only programs really across the country and even internationally that provides care in that way, putting patients on disease modifying therapies and bringing cutting edge research to those affected individuals,” said Dr. Anderson.

For Alvonte Pyles, the Prisma Health Sickle Cell Lifespan Center has allowed him to feel supported in his need for ongoing treatment with a team who knows him and is just as determined as he is to help him reach his goals and live a fulfilling, healthy life.

“Prisma Health’s been great,” Alvonte said. “I’ve been here for pretty much 30 years, and I can most definitely count on my doctors here. Even the receptionist has known me since I was very, very little. Dr. Anderson and the team have a great relationship with me, my mom and everything like that. Being in this program has most definitely put me on a trajectory of better living.”