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Real Life patient Stories

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When Tahirah Austin puts on her CHOP employee badge every morning, she feels lucky: at 25, she already has her dream job. A graduate of Neumann University with a degree in biology, Austin works for CHOP’s Research Institute, where she helps guide patient families through research studies on sickle cell disease.

She’s long had a love of science, but there’s a personal reason Austin is so invested in helping CHOP’s sickle cell patients: for 17 years, she was one.

While today mandatory newborn screening detects the disease at birth, Austin was born in 1986 at a hospital that hadn’t yet started testing. It wasn’t until Austin collapsed in kindergarten at age 6 that Kim Smith-Whitley, M.D., diagnosed her. Dr. Smith-Whitley remained her hematologist until Austin transitioned to adult care at age 23.

Austin has been hospitalized more times than she can count. She spent the whole of her 4th grade year out of school, with three months as an inpatient at CHOP having her spleen, gall bladder and appendix removed. Every winter she has been hospitalized at least once for acute chest syndrome, a type of pneumonia caused by sickle cells getting caught in the lungs. When she was 11, she had a heart attack followed by silent strokes, but luckily she survived without permanent damage.

Children with sickle cell often need to be hospitalized just to manage the severe pain.

“Picture someone hitting you with a bat or stabbing you with a knife without stopping,” says Austin. “The pain is constant and sharp and sometimes it’s so bad you can’t even walk. It can be anywherestomach, back, arms, legs, hips.”

Both at work and at home, she is an advocate for people living with sickle cell disease. This year she met with members of Congress in Washington, D.C. as part of a national Sickle Cell Advocacy Day. On top of her full-time job at CHOP, Austin spends hundreds of hours each year volunteering as a director of Camp Dragonfly Forest, which gives kids with sickle cell and other chronic diseases a medically-supervised place to just be kids. Even if a pain crisis strikes, she makes no excuses.

“I don’t want anyone to say, “She couldn’t do that because she has sickle cell.’” She says. “I absolutely can.”