Because sickle cell patients look like there’s nothing wrong with them, it can be hard for others to understand that they have a chronic incurable disease leading to stigma and misunderstanding.
Many individuals living with sickle cell disease are characterized as being lazy or as being a drug seeking because they show up at the emergency room looking for medication to help alleviate their pain. Unfortunately because of the opioid crisis in this country, many sickle cell patients are described as being drug seeking when in fact they just looking for help.Beverley Francis-Gibson, President & CEO, Sickle Cell Disease Assoc. of America
Patients experience episodes of extreme pain that could land them in the hospital. The website sicklecellspeaks.com features the stories of real patients and caregivers. The goal is to educate the public while also offering support to those with the disease.