Ten years ago, there was only one treatment available for sickle cell disease, advocate Ashley Valentine says. Today, there are more drugs and resources.
Growing up, Nilda Navedo had invisible pain that she kept hidden. That was the Hispanic way, she says, even though it’s an inherited blood disorder.
A stroke in Elodie Ontala’s right eye changed the course of her sickle cell treatments. It was no longer just about managing the pain.
Adults with sickle cell face challenges like disease progression and less resources, advocate Derek Robertson says.
People tend to avoid going to the emergency room with sickle cell crises, but the intense pain often calls for IV opioids, advocate Derek Robertson says.