blood disorders

Emily Forman / Side Effects Public Media

Doctor Emily Meier usually practices hematology at the Indiana Hemophilia and Thrombosis Center in Indianapolis. But four times a year Meier and her team drive two hours north to Lake County, Indiana and host a clinic for children diagnosed with sickle cell disease.


More Sickle Cell Patients Survive, But Care Is Hard To Find For Adults

Mar 23, 2016
Janoi Burgess studies for his nursing degree in his room at his home near Miami.
Liam Crotty / KHN

When Janoi Burgess was a child, he thought doctor appointments were fun.

“I used to love it because they had a section where you could play games,” said Burgess, who was born with sickle cell anemia, an inherited blood disorder. “They were really nice and friendly.”

But when he turned 21, the South Florida resident could no longer go to his pediatric specialist. Instead, he “bounced around” to various adult primary care doctors, none of whom seemed well-versed in the details of his condition. When he had a painful sickle cell crisis two years later, his only choice was to go to a hospital emergency department, where, he says, he waited three hours for pain medication.

“They triage you based on severity, and pain is not something that they consider as severe” as other conditions, he recently recalled. “One doctor even said, ‘Your labs are OK so you’re not in pain.’ It was crazy and insulting at the same time.”

For the first time, scientists have edited DNA in human embryos, a highly controversial step long considered off limits.

Junjiu Huang and his colleagues at the Sun Yat-sen University in Guangzhou, China, performed a series of experiments involving 86 human embryos to see if they could make changes in a gene known as HBB, which causes the sometimes fatal blood disorder beta-thalassemia.