Addressing the complexities of hEDS care using community engaged research

Patient speaker, Gretchen Jongekryg, a nurse at the Medical University of South Carolina, was recently diagnosed with Ehlers-Danlos syndrome. Working specifically at MUSC, one of the few medical facilities that treats some of the more severe EDS patient cases, Gretchen shares how it felt to receive this diagnosis and her experience thus far with this invisible illness. Kaitlyn Esposito, Research Director of BJCSF, shares an update on a current research project, the Chiari Surgical Success Scale. Our third speaker, Dr. Michelle Nichols, is a registered nurse with a PhD, her research focus is multi-morbid chronic diseases. Dr. Nichols speaks to us on: Addressing the Complexities of hEDS Care Using Community Engaged Research. As Director of Community-Engaged Research, Dr. Nichols is tasked with training academic and clinical scientists and community members on how to do research together. Dr. Nichols also has EDS and shares not only the clinical complexities of EDS but her personal experience, especially in this field. If we can work together, we can find answers and relieve pain sooner. This lecture was given at the Medical University at South Carolina on July 24th. (2024)