DEWY AS A CHILD © COURTESY OF SCTPN
Dewy, 26, was born with Sickle Cell Disease (SCD), an inherited blood disorder that changes how red blood cells carry oxygen. Under dehydration or low-oxygen conditions, the cells can become rigid and crescent-shaped, clumping together and restricting blood flow—often triggering intense pain.
Dewy’s earliest memory of that pain goes back to grade school. “I don’t remember how old I was, just that I was young and didn’t understand why my legs hurt so badly,” he recalled. His mother explained it was sickle cell, and they went to the hospital. His older brother carried him to the car and sat with him in the back seat, rubbing his legs as their mother drove.
“This was pretty much the routine all the way through high school,” Dewy said. Pain struck in class, out with friends, even during outings. “I know pain like I know the flavor of my brother’s fried chicken,” he said—familiar because it has been woven into every part of his life.
Despite long hospital stays, Dewy graduated high school early, supported by his mother and brother. He went on to earn a degree in dance and education and remains in touch with teachers who encouraged him. But he also learned how often people with SCD are expected to perform as if they aren’t managing a disability at all—judged for missed tests or paperwork, while the effort it takes to keep up through pain goes unseen.
HOW SICKLE CELL AFFECTS THE BODY
When sickled cells block blood flow, they can cause severe pain episodes—often called “crises”—that range from manageable to life-threatening, often requiring hospitalization. Triggers can include infection, dehydration, overexertion, or cold temperatures. Over time, reduced oxygen delivery can damage organs and lead to serious complications such as stroke, cardiac complications, kidney failure, and acute chest syndrome.
THE COST OF BEING OVERLOOKED
Because sickle cell pain is often invisible, patients are frequently misunderstood or dismissed—and critical emergency care may be delayed. Families face repeated hospital visits, mounting costs, mental and emotional strain. Children miss school. Adults and caregivers struggle to maintain employment.
Public awareness matters beyond the hospital, too. Many people learn they carry the sickle cell trait only during pregnancy or after newborn screening. With more education, trait testing, and genetic counseling, individuals can make informed family-planning decisions.
When society doesn’t understand sickle cell, stigma grows—and patients are left fighting battles few see, hear, or support.
BRINGING CARE AND HOPE
“Sickle cell does not only impact the individual living with it, it affects the entire family,” said Ginger Davis, PhD, President of Sickle Cell/Thalassemia Patients Networks (SCTPN). She describes a condition that shapes daily choices and creates constant uncertainty—especially when emotional and psychological stress isn’t addressed as part of care.
Founded in 1984, SCTPN began as a support group for adults living with sickle cell and thalassemia (Cooley’s anemia). Today, it serves thousands of individuals and families through education, advocacy, social support, and policy work—locally and globally. Its mission is bigger than symptom management: it’s about dignity, compassion, and ensuring no one faces sickle cell alone.
Today, Dewy is a professional dancer and choreographer who gives back by teaching dance in the SCD community and encouraging youth to pursue their dreams. Sickle cell is lifelong—but suffering in silence doesn’t have to be. With awareness, compassionate care, and community support, families can move from crisis to stability and hope.
Learn more, get involved, or offer support at SCTPN.NET
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SCTPN is dedicated to improving the quality of life for individuals and families living with sickle cell disease, thalassemia and other inherited blood disorders through education, advocacy and support interactions. SCTPN seeks to diminish the negative social, psychological, and economic impact these debilitative disorders have on our community.