New drug could help those fighting sickle cell disease

It’s a deadly disease that could run in your family, and there aren’t very many drugs to treat it. But, there’s new help on the way for sickle cell disease patients.

“My daughter actually describes it as someone taking a hammer to her bones and just continuously hitting her,” said Mapillar Dahn.

That’s the pain she says her daughter goes through as she lives with sickle cell disease: a condition that deforms red blood cells and limits oxygen delivery in the bloodstream.

But it’s not just her oldest daughter that suffers from the disease.

“When she was seven, she had a stroke,” said Dahn of her youngest daughter.

The disease is the leading cause of strokes in kids. And when the little girl returned to school, it lead to difficult conversations with her classmates as they didn’t know what had happened.

“She could barely walk, talk or write, and it wiped her out academically,” said Dahn.

“We want sickle cell disease to be a household name in this country,” says Beverly Francis-Gibson, the president and CEO of the Sickle Cell Disease Association of America.

“There are people dying needlessly from a silent killer,” she said.

Francis-Gibson says right now, there are only two drugs on the market to treat the disease, which affects about 100,000 Americans; mostly black, African-American or Hispanic Americans.

She says new drugs to treat the disease is desperately needed.

Right now, the Food and Drug Administration is reviewing a new treatment called Voxelotor. It would stop red blood cells from breaking down and help patients live better lives. The FDA is expected to decide on the drug before Feb. 26, 2020.

“We want people to know that sickle cell matters,” Francis-Gibson said.

She also says they’re trying to fight that stigma right now with a new website called sicklecellspeaks.com, where you can find stories from other patients and find a specialist if you need to get some help.

“Because we’re very passionate about creating awareness about sickle cell,” said Dahn, as she works to raise three children who may pass the disease on to their own.