sickle cell anemia

Emily Forman / Side Effects Public Media

Tamitria Jernigan takes her daughter Tashea to the Peyton Manning Children’s Hospital at St. Vincent’s in Indianapolis every three weeks for a blood transfusion. Tashea has a blood disorder known as sickle cell disease, and it caused her to have a stroke when she was two years old. The regular blood transfusions prevent her from having another one.


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.


Pixnio

One of the first uses for the buzzy gene-editing tool CRISPR could be a treatment for patients with sickle-cell disease. But the Black community’s troubled history with medical trials and testing could make testing its effectiveness difficult.

When cracking down on opioids means tougher access for sickle cell patients

Apr 20, 2016

Growing up, as the searing pain of a sickle cell crisis would spread through her veins, Tanjila Bolden-Myers would ask her mother if this time, it would kill her.  

“I ask her now to this day, ‘Mom, how did you look me in my face and not break? Every time I asked you that?’” said Bolden-Myers, now 38. “And she was like, ‘No, baby, you’re not going to die this time. You’re not going to die.’”

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.”