You wouldn’t be able to tell from the outside. By all accounts, life would seem normal, happy—healthy, even. You could be looking at an athlete, a star student, a gap-toothed toddler, and you would have no idea that any one of them might be bracing themselves for the next bout of pain caused by a microscopic culprit: their red blood cells.
An estimated 3,000 children and adults in Louisiana suffer from sickle cell disease, an inherited disorder most prominent in African Americans that results in the abnormal curvature of typically disk-shaped red blood cells. In addition to their shape, the surface of the cells also presents as hard and sticky, making the tiny couriers’ passage through blood vessels prone to traffic jams, halting the delivery of oxygen to crucial organs of the body. Not only that, but the cells tend to die prematurely, meaning that patients often find themselves in need of blood transfusions or, in severe cases, risky bone marrow transplants. Without any external signals to make the disease visible to an outsider, it’s no wonder why organizations like the Sickle Cell Association of South Louisiana have remained a necessary—and visible—advocate for 47 years, having recently expanded beyond Baton Rouge and into Lafayette and New Orleans.
“Our clients often require a lot of emotional support, because it isn’t really a disease that can be widely cured as of now,” says SCASL executive director Erin Fulbright. “Louisiana doesn’t have as many researchers as places like Johns Hopkins or the Boston or Chicago areas do, so it’s important for us to partner with other institutions and hospitals like Our Lady of the Lake and St. Jude to help shed a little more light on the disease.”
For example, many patients of sickle cell risk becoming addicted to the pain-killing drugs used to lessen the symptoms of what the sickle cell community refers to as a “pain crisis.” The pain experienced during these crises could strike almost anywhere in the body, lasting for hours or even days, though the experience of living with chronic pain can be managed with the right therapy and guidance. Once COVID rates begin to fall, Fulbright also hopes to reinstate the in-person peer groups that help build community among those dealing with the disease.
“People with sickle cell need to stay hydrated, so something as simple as having constant access to water or the electrolytes in sports drinks like Powerade can help increase blood flow,” says Fulbright. “We also have a care coordination service where we basically serve as liaisons between our clients’ schools and jobs, helping inform people in their lives about the type of special assistance they might need. When we check in monthly with our clients, we might even find ourselves helping them mentally and physically prepare for something like air travel, since the altitude can often result in a pain crisis.”
On the more practical side of the spectrum, quarterly blood drives put on through the Every Ounce Counts program collect healthy blood cells for transfusion, and SCASL’s Fountain of Health program works to ensure that clients stay hydrated by delivering cases of water or sports drinks to them each month. In tandem with scholarship opportunities and services like KNEAUX Sickle, which teaches sickle cell patients ages 12 to 21 how to communicate their special needs and prepare for adulthood, the simple project has helped the organization’s youngest clients in particular, since COVID policies forbade the use of water fountains in many schools.
Caretakers and parents like Rhonda Chube-Camel have known for years the benefits of this type of support, having been involved with the SCASL ever since her now-8-year-old son Gabriel received a sickle cell diagnosis not long after birth.
“Gabriel is a busy, happy child,” she says. “He wants to be a fireman—he has dreams and aspirations, just like every other child. But I just want people to understand that children and adults with sickle cell are having a really tough time, and we need to give them grace and compassion, because they are facing pain on a daily basis. Their pain is real.”
Though Chube-Camel says that her family knows how to monitor Gabriel’s wellbeing, and that Gabriel has learned to manage sickle cell through outlets like art therapy, even the toughest sickle cell patients must push through challenges. The organization’s upcoming fundraiser on September 25, Ryan’s Run/Walk, takes its name from former LSU football player Ryan Clark, whose sickle cell trait resulted in emergency surgeries caused by a pain crisis in the high altitudes of Denver in 2007.
“Not a lot of people really know about sickle cell disease—even I didn’t know much until the past few years,” says Fulbright. “But with September being Sickle Cell Disease Awareness Month, there’s no better time to get involved and learn about something you may not have known was going on in your community.”