When children with sickle cell grow up, they face a system not designed for them

06/20/2022

Farah Yousry, Side Effects Public Media

The adult sickle cell system is tough to navigate alone. And to make matters worse, some sickle cell patients have silent brain strokes over the years that can cause cognitive challenges.

“These can all affect memory and planning and the ability for patients to organize their medications and take them on a regular basis," said Dr. Brandon Hardesty, a sickle cell disease hematologist at the Indiana Hemophilia and Thrombosis Center.

The ideal approach to caring for sickle cell patients, he said, is a holistic one, involving a social worker and a psychologist. Such care is often only possible in comprehensive sickle cell centers.

But most sickle cell patients don’t have access to those centers. So when they transition from pediatric to adult care, they often do so without that added layer of support.

Source: Side Effects Public Media