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Sickle cell scientist fights for a cure for herself and others - CNN
Jun 18, 2021 1 min, 7 secs
As a child, she missed weeks out of every school year because of sickle cell -- a painful, genetic disease that's believed to impact 100,000 Americans.

Patients' red blood cells are "sickle" shaped and can clump together to impede blood flow to the rest of the body, causing serious problems, including strokes and organ failure.

When the condition flares up, an event known as a sickle cell crisis, "you cannot move, you can barely breathe without intense full-body pain in some cases, or it might simply be two arms, one leg, a foot," the 42-year-old told CNN.

She remembers, as a child, fearing the night because that's when her sickle cell crises most often hit.

"I thought there was something about the hours between 2 and 5 a.m.

"I think that knowledge, that sickle cell disease was always sort of waiting in the shadows, kept me running forward and pushing ahead."

Founding the Sickle Cell Consortium

In 2014, Bailey founded the Sickle Cell Consortium, a non-profit that advocates for patients and their families.

The organization helps families find the care they need, including mental health resources, and shares ways to avoid sickle cell crises.

She's on the National Institutes of Health's Sickle Cell Disease Advisory Committee, and she is an executive member of the government's Cure Sickle Cell initiative created by the National Heart, Lung and Blood Institute.

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