Amanda Fields and Eva Langston talk with Jill Dopf Viles, the author of Manufacturing My Miracle: One Woman’s Journey To Acquire Her Personalized Gene Therapy. Jill writes about her experiences with Emery-Dreifuss muscular dystrophy. These experiences are placed in the hands of a deft and lyrical writer who often surprises the reader with unforgettable images and memories even as she works through the story of diagnosis, acceptance, and further research. She persists in making her own connections about EDMD as she performs her own research, discovers others with this rare condition, communicates with medical researchers, and weighs the risks and benefits of matters such as personalized gene therapy.
Since the age of 19, Jill Viles has sought answers for a rare genetic disease that has plagued her family for generations. She began her studies in her university library and genetics courses. But her most fruitful efforts involved an internship in a genetics lab with a medical doctor. Over the next 30 years, Jill self-diagnosed her family with Emery-Dreifuss muscular dystrophy, a disease originally dismissed by her neurologist because it was thought that “girls don’t get that disease.”
Author website: https://diyscientist.blog/
Obituary: https://www.laufersweilerfuneralhome.com/obituaries/jill-viles
ProPublica article: https://www.propublica.org/article/remembering-jill-viles-diy-geneticist-muscular-dystrophy-david-espstein
