Staff of the Penn Comprehensive Sickle Cell Program. Not pictured: Social worker Michelle Ross.
Inside a room at the Perelman Center for Advanced Medicine, Nicole Iverson of Lansdowne, Pa., leaned into a microphone at the front of the room and introduced herself as a patient who had been not living, but “thriving,” with sickle cell disease for 48.5 of her 49 years.
Iverson wanted the more than two dozen patients gathered, plus others tuned in remotely, to know what she firmly believes: Despite the fact that the disease – which primarily affects African-Americans – can cause episodes of excruciating pain as well as long-term complications throughout the body, she believes firmly that those with sickle cell disease “can do whatever you want to do in life, whether it’s open up a business, go to school, work full-time … you can do all of that.” She herself is doing every one of those things: In addition to being a wife and a mother, Iverson works as an accountant for a manufacturing firm, has her own accounting business, and is pursuing a master’s degree in accounting.
Speaking on a patient panel at Penn’s Comprehensive Sickle Cell Program’s first education symposium for patients with the inherited blood disorder, Iverson opened up about her decision to take hydroxyurea, a medication approved in 1998 to change the progression of the disease, and which hematologist and sickle-cell researcher Scott A. Peslak, MD, PhD, said is now recommended for all patients with sickle cell anemia. The medicine has dramatically reduced the frequency and severity of Iverson’s pain episodes, which happen when the rigid crescent or sickle-shaped red blood cells that cause the condition get stuck in blood vessels and block the flow of blood and oxygen. When she does have an episode, she told the group, she puts on her favorite music or TV show and jogs around her house to get through the pain.
The patient panel capped an evening packed with presentations and discussions for patients to learn about their disease and the latest treatments, talk directly with researchers, and hear how their participation in research studies will help clinicians learn how to better recognize and treat the disease in future generations of patients. The program was made possible by a grant from SiNERGe, a multi-state collaboration to increase the education of providers around sickle cell care as well as improve access to comprehensive and equitable care for adult patients.
“There is finally hope for many patients with sickle cell disease,” said Sickle Cell Program Director Farzana Sayani, MD. “Advances in our understanding of the disease have led to the development of new disease-modifying therapies that, together with comprehensive, preventative, and equitable care, has the potential to improve patients’ lives and survival.”