Raising awareness to sickle cell anemia

(WPRI) - Little is known about sickle cell anemia, because for a long time, people with the illness in their families didn't talk about it.

Now, a local boy who's is battling the deadly disease wants to change that. Sickle cell disease affects roughly 300 people in Rhode Island, by one doctor's estimate. Even those who do not have the disease could pass it down to their children.

• What is sickle cell?

Like most 11-year-old boys, Ife Ajayi-Bembe loves sports. But sometimes the pain from his sickle cell disease is so bad, he can't play.

"I get a pain in my leg or in my back, just like a pinching pain," he tells us. "It feels awkward because you kind of feel different from other kids, but at the same time it hurts.... Not like the pain that hurts, it hurts inside that you have it."

Sickle cell is a genetic blood disorder most common in African Americans and Hispanics. Red blood cells are normally round, but when they sickle, they form what looks like "c" shape. That makes it difficult for the blood cells to get to vital organs. It can also lead to clots, chronic pain, anemia, and early death.

• American Sickle Cell Anemia Association

Dr. Anjulika Chawla from Hasbro Children's Hospital adds, "In the brain, you could get strokes. In the kidney you could get renal failure. In the lungs you can get acute chest syndrome."

Dr. Chawla says compared to some of her other sickle cell patients, Ife is doing well. But the disease is unpredictable.

When asked about Ife's future health, Dr. Chawla can only answer, "I worry, but I don't know."

• Sickle Cell Clinic at Hasbro Children’s Hospital

Both of Ife's parent's have the sickle cell trait. They knew he had the disease before he was born, allowing them to better prepare and manage his disease.

• Web Extra: Getting Tested for Sickle Cell

"We've made a lot of progress," says Dr. Chawla of sickle cell treatments. "But they're not good enough yet. We need better pain management, we need better awareness."

With improved treatments, people with sickle cell are now living into their late 40's early 50's. And in some rare cases, some are cured through a bone marrow transplant.

Ife hopes to raise awareness by sharing his story. And when he grows up, he wants to be a scientist and get rid of the disease all together. He says his goal is to "Get kids that have sickle cell cured... so that they don't have to deal with it anymore." When asked what keeps him going even when he's in pain, Ife's answer is simple; "God."