Sickle Cell Disease

Kamia Quinones says she and her husband call Oct. 24, 2013, her “new birthday.”

That’s the day the mother of three underwent a stem cell transplant, using cells donated by her older brother, to cure her sickle cell disease.

Kamia was diagnosed with sickle cell disease when she was 2 years old. Because an older sister had been diagnosed with a milder form of the disease, her mother recognized her symptoms. Although she had to be hospitalized three or four times a year as a child, Quinones did not consider her symptoms severe until she turned 16. By the time of her transplant, she says, she was going to the hospital every four weeks.

“It’s like being tortured from the inside out,” Kamia says of her symptoms. “I don’t mean to downplay childbirth in any way, but when you get the pain in your knees and back and it feels like your chest is going to explode, there’s nothing you can do except pray and hope it goes away.” Possibly worse than the physical pain is the mental anguish that goes with it. “You don’t know how long it’s going to last,” she says, “and you don’t know when it’s going to come back.”

But what bothered her most was the impact the illness had on her children. “It was hard for them — going back and forth to grandma’s house, their mom not being there when they had a play or a concert or a game.”

In 2013, Kamia’s mother saw a new report about a clinical trial being investigated at UI that cured people with sickle cell disease. Kamia, who lives in nearby Hobart, Indiana, contacted UI Health to join the study. “Some doctors back where I’m from didn’t know as much about sickle cell as they do here,” Kamia says. “I saw that they had a sickle cell program — a whole floor especially for sickle cell patients — and it blew my mind!”

In order to be cured, a patient must have a donor whose human leukocyte antigen (HLA) proteins that perfectly match their own. Kamia’s brother, P.J. Hearns, was a perfect match, and he donated the stem cells for Kamia’s transplantation. Jokes P.J.: “I gave her my stem cells — and I gave her my allergies! That was the trade-off!”

One low point for Kamia came shortly before the transplant. “I had been ill the whole night, and it had gone to full-blown crisis,” she recalls. “My son came to hug me goodbye before school. His elbow hit my knee, and I screamed in pain, and he started to cry. I had to get control of myself even though it hurt.” 

But three years since the transplant, Kamia has not required hospitalization.

Kamia prefers to talk about her “awesome support system” of family and friends, and the improved quality of her life after the transplant. “I was in the hospital on my daughter’s 10th birthday,” she reflects. “My best friends took it upon themselves to throw her a surprise party, and that meant the world to me.

“I’m blessed that I was chosen to have the transplant. It’s a relief for the whole family. Sickle cell doesn’t just affect you. It affects everyone around you,” she says.

Kamia now delights in activities that many people might take for granted. “Taking my kids to the beach, swimming with them, going out in the cold and building a snowman—those are things I can do now,” she says. “It’s been over two years, but I still have to pinch myself and say, ‘This is real.’

“The care I received here at UI Health — it was amazing!” she says. “I haven’t had a crisis in three years. It’s great to just live life without that worry.”