From Patient to Scientist: Former Norris Lab HIP Participant Sofia Willey’s Journey to Further Ehlers-Danlos Syndrome Knowledge

The Norris Lab extends a heartfelt congratulations to our previous HIP intern, Sofia Willey for being highlighted for her outstanding achievements while completing her BS at Clemson University. By age 15, Sofia had her first of five hip surgeries. She was eventually diagnosed with hypermobile Ehlers-Danlos syndrome five years later. While the diagnostic process was challenging for her, due to a lack of clinical awareness about hEDS, Sofia remained determined to learn more about her condition. Sofia is dedicating her academic career to advancing the fields of genetics and molecular biology with the hopes of one day identifying a diagnostic tool for EDS patients.

Sofia was selected for the HIP program at the Norris Lab as a summer intern in 2024 after deciding to pursue an academic career in genetic research. Her interest in genetics was spurred by her goal of improving clinical understandings of hEDS, which affects 1 in every 500 people. Sofia spent her summer at the Norris lab helping to analyze protein levels in patient serum samples, and the results of this work will be published in the coming months.

According to Clemson News, Willey said her time in the Norris lab, which also included patient education, has helped her better understand her disease and problems she experiences in her own body. Willey has spent her time outside of the lab explaining EDS and EDS research to patients in her area, including making educational packets for recently diagnosed patients and their parents.

The patient-scientist model at the lab creates an inclusive environment, where patient-scientists like Sofia can deepen scientific understanding while drawing from their unique insights, enhancing research quality and relevance. The Norris Lab is proud to have been part of her journey, and we can’t wait to see the incredible impact she’ll make in the field. Her determination to help others by advancing understanding and care for hypermobile Ehlers-Danlos Syndrome is truly inspiring. Congratulations, Sofia!

To learn more about Sofia and her research, follow this link: https://news.clemson.edu/helping-others-while-helping-herself-clemson-senior-sofia-willey-is-researching-her-own-rare-disease/