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Sickle and Me

Tuesday, December 11, 2012

WNYC
Radio Rookie Bree Person in the studio

Nearly 100,000 Americans suffer from a blood disorder called Sickle Cell Anemia, a painful disease that shortens life-expectancy. Sickle cells aren’t round – they’re shaped like a crescent moon and Radio Rookie Bree Person hates looking at them. Sometimes she hates talking about them, too – but she put together this report nevertheless.

Bree says she's basically two people: Sickle Cell Bree is difficult, tired, and in pain. But Super Bree gets tired of being tired. She's outgoing, ready to jump, ready to climb and "ready to be a boss," Bree says. "That means someone who takes control of her life."

But when Bree gets sick and has what are called crises, pain can take over control. She has to take care of herself to try to fend off these crises. "Doing too much, or even getting too upset, can send me into a crisis," Bree says. "My fingers start to swell up, and my legs start to shake. It can last from minutes, to hours, to days. The thing is, my pain doesn’t show. And it’s hard to explain."

Dr. Suzette Oyeku is a pediatrician in the Bronx who specializes in Sickle Cell treatment and research. "Even though the disease has been described for more than a hundred years it’s still pretty invisible to many people," Oyeku says. "And there are many people that are suffering in silence." While major advances have been made in the treatment of Sickle Cell over the past thirty years, Oyeku has found that inequities still exist in government and private philanthropic support for research into the disease. She's working to improve the quality of care and minimize disparities in child health for ethnically diverse populations.

Sickle Cell disease occurs more often among people from parts of the world where malaria is common. It is believed that people who carry the sickle cell trait are less likely to have severe forms of malaria. In the US, where malaria is rare, one of every 500 Black or African-American babies is born with it. Bree was one of those babies, and her Uncle Johnnie was another. 

"My Uncle Johnnie’s disease was more severe than mine," Bree says. He was only expected to live to 18; but he made it to 38. While reporting her story, Bree asked her mom for the first time if she, too, had a life expectancy. Her mom told her 48.

"I didn’t know what to think about that," Bree said. "I mean, my mom is 41 now, and imagine, seven years from my mom’s age -- am I going to be totally unable to take care of myself?"

But Bree is a force to be reckoned with, according to her mom. "There was a time when you were really feeling bad, and I actually tried to feed you," her mom said. But Bree refused the help. "You were like, 'I got it!' And I was like, 'Oh ok.' That made me so happy." 

"My mom and dad both taught me to handle things on my own," Bree says. "I shouldn’t run – but I do. I shouldn’t swim – but I do. I shouldn’t take the stairs – but I do." Bree won't let her disease define all of her. "Yes, being a sickler interferes with who I am," she says, "but it also makes me who I am."

Listen to Bree's story to hear why she struggles with wanting to spread awareness about Sickle Cell, but not wanting to tell people she has it. 

If you'd like to leave a comment email radiorookies@wnyc.org

Produced by:

Veralyn Williams

Editors:

Marianne McCune

Contributors:

Bree Person

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