Doctor advocates for awareness of sickle cell disease

BOWLING GREEN, Ky. – For children living with sickle cell disease, severe pain, frequent hospital visits and ongoing medical care can be a regular part of life.

During Sickle Cell Awareness Month, experts are encouraging greater understanding of a condition that disproportionately affects Black families. Sickle cell disease affects hemoglobin the protein in red blood cells that carries oxygen throughout the body. When hemoglobin is abnormal, it can limit the amount of oxygen reaching tissues and organs throughout the body.

Norton Children’s Hematologist Dr. Erica Mamauag says common symptoms include episodes of severe pain, an increased risk of infections and other complications that often require regular follow-up care.

For children and families living with sickle cell disease, the challenges can include misconceptions about the condition and the pain it causes.

“Having education about sickle cell is really important, especially because in the past when less was known about sickle cell disease, these patients would come in with pain and people wouldn’t believe it. And so the biggest push with these awareness days is that the pain is real. And so the biggest push with these awareness days is that the pain is real,” Mamauag said.

More than 90% of people in the U.S. with sickle cell disease are Black, and about one in every 365 Black babies is born with the condition.

While managing the condition often requires frequent monitoring and specialized treatment, Mamauag says outcomes have improved dramatically over the past few decades.

“If anything, being something that affects a very specific community is makes it even more important to get all this awareness and education out there with it affecting 90,000 African Americans in this country. That is a population that already has health disparities, when we look at the literature, so add on a chronic condition and that really amplifies the difference in care they may receive,” Mamauag said.