Patient Stories
Mapillar Dahn-Flemister describes raising children with sickle cell disease like walking on eggshells. "You just never know when there could be a pain crisis…
Dr. Stephan Biheng, growing up in Cameroon, would be struck with bouts of intense, bone-crushing pain.A “pain crisis,” they call it.When Biheng speaks of these…
A 12-year-old is the first patient in the state to receive a new form of gene therapy.By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.…
The Sickle Cell Data Collection program reported maternal death rates in California (2004–2014) of 629 per 100,000 for Black women with SCD, 12 per 100,000 for…
Seventeen-year-old Sani’Yah Johnson and her 7-year-old little sister, Rah’Niyah, have a lot in common. As Sani’Yah hones her skills as a hair stylist, Rah’Niyah…
Richard Fletcher participates in martial arts like Wu and Krav Maga to cope with the pain associated with sickle cell disease. One of four children, he lost his…
Kyriako Damavoletes has HbS beta thalassemia. This means he received a HbS gene from one parent and a beta thalassemia gene from the other.Both Damavoletes and his…
Julian Cann uses writing and similar activities to relieve stress and deal with the pain of sickle cell disease.He’s a young, up-and-coming rapper who performs and…
Stephon Fisher is a normal guy. He works, he hangs out with friends, he enjoys time with his family, he plans for a healthy future. And this type of existence is…
When Desmond was born, his mother called him the “glass baby.”“He was so small and so delicate,” she recalls, “that when he swelled, he looked like his skin would…