-
サマリー
あらすじ・解説
Roman Fenner is a 22 year old research technician at Duke University and is applying to medical school. He was diagnosed with EDS alongside his mom and sister at the age of 9 by a geneticist. Over the next 7 years, in addition to his original diagnosis of Hypermobile Ehlers-Danlos syndrome, he was diagnosed with Cranio-Cervical Instability, Chiari, Tethered Cord, Intracranial Hypertension, POTS, Mast Cell Activation Syndrome, and Dysautonomia. He now hopes to achieve his MD/PhD so he can study EDS, Chiari, and related disorders to then develop newer, and more effective treatments for patients. He has already presented his research on these disorders across the country including conferences at Harvard University, and at Unite@theHill (an event hosted by the Bobby Jones Chiari and Syringomyelia Foundation where patients have the opportunity to lobby congress for increased funding and awareness). Like all of us, Roman had to give up the things he loved after his diagnosis, but he found a new passion in music. This has given him a way to cope with the severity of his disorders, leading him to even dual major in both biology and music in college. He encourages all patients to find something that they can be passionate about while tackling these disorders.