Pain is a constant of Beverly Chukwudozie’s entire life. Not every minute of every day, and not always severe — what she calls a “10” level of pain.
But most minutes of most days, somewhere between discomfort and agony. And the rare times the pain vanishes altogether, it is always still in the background, “a constant fear.” Certain to return, the only question being when, and where and how severe.
Chukwudozie, 43, doesn’t remember a time when it was otherwise. As a girl in Nigeria, she was told she was suffering from rheumatoid arthritis. That’s what made her joints ache, sometimes as if they were being stabbed with a knife.
“I had a major complication that kept me in the hospital for about a month,” she said. There, a hospital resident told her, offhandedly, that no, it wasn’t arthritis. It was worse; she had sickle cell disease, and might expect to live to be 21.
She was 12 years old.
“There was really limited knowledge at the time,” she remembers. “I did my best to find out more about it.”
So did I. After Gov. J.B. Pritzker’s office announced September is Sickle Cell Disease Month. I realized that while I’d heard of the disease, I knew almost nothing about it except that it affects Black people, primarily, making their blood platelets, rather than being vaguely round, take on a crescent shape — the “sickle” part of the name.