By Kay Bennett

Shaun “Sturdy” Griggs is a passionate advocate for sickle cell awareness. Last fall, Griggs spoke about his experiences at Red Cross House in Philadelphia, where a blood drive was being hosted by the Crescent Foundation, a Philly-based nonprofit serving the sickle cell community.

Griggs has been living with sickle cell disease his entire life. When he was 3 years old, his mother noticed swelling, and he seemed to be in severe pain. After a battery of tests at the hospital, the diagnosis came: type SS sickle cell disease.

“Everyone’s pain is different. Mine was like a heartbeat – if you can picture 100 knives stabbing me in the stomach. BOOM! BOOM! BOOM!” he shouted, thrusting his hands toward his abdomen in a stabbing motion.

Such an episode, known as a sickle cell crisis, is one of the major red flags for SCD. A crisis occurs when the sickle-shaped cells cannot flow freely through the bloodstream, causing a blockage. This blockage can lead to severe discomfort and pain, and the repercussions often include decreased flow of oxygen throughout the body and organ tissue damage.

Griggs’s adversities regarding sickle cell disease are often the result of a lack of public knowledge about the condition. Time and again he has found himself explaining the nature of the disease to others, and it was this uphill struggle to increase recognition of the disease that inspired him to become an advocate for Sickle Cell Awareness. He fiercely believes that sickle cell disease should receive more widespread attention.

To illustrate the discrepancy in awareness, Griggs compared sickle cell disease with cancer. Many people, especially health care professionals, are acutely aware of symptoms affecting cancer patients and have a good familiarity with effective treatments. But with sickle cell disease, care teams in hospital settings often need to be educated by their own patients. Patients may have to strongly advocate for themselves, emphasizing the severity of their pain and the lifesaving treatments they need.

Griggs also talked about the feelings of invalidation sickle cell patients may experience. Hospital staff may not fully understand the disease, so they often fail to understand the severity of the associated pain. Griggs tends not to cry in most situations—including health care settings. People should not have to be in tears, he says, to have their pain taken seriously.

“You wouldn’t be able to tell I have [sickle cell disease] by looking at me, but it’s shaped my life,” he said. “The pain is random. It can happen at any time.”

At one point, the lack of sickle cell awareness even threatened Griggs’s life. He was in a juvenile detention facility and began to have a crisis, but the guards and medical staff refused to get him the treatment he needed. As a result of that failure to receive timely medical attention, he walked with a limp for a year and now has permanent swelling in his knee.

Griggs’s frustrations with such health care disparities are what motivates his outspoken advocacy today. When a friend introduced him to Crescent Foundation co-founder Tahirah Austin-Muhammad, the two quickly bonded over their shared experiences with sickle cell disease. Eventually Griggs began speaking at various events held by the foundation. He describes Tahirah as a “great advocate” for sickle cell awareness.

Sickle cell-focused blood drives, like the annual one hosted by the Crescent Foundation, are vital to the sickle cell disease community, Griggs says. “Not a lot of people notice that we [sickle cell patients] actually need blood transfusions,” he said, “and some of us need blood transfusions more often than others. This means a lot just to spread the word.”

Editor’s Note: In commemoration of Black History Month, the American Red Cross is joining organizations across the country to focus on the importance of health and wellness in our Black communities. Throughout February, we’ll be sharing information about our Sickle Cell Initiative, stories from those impacted by sickle disease and ways that community residents can help.