Jill Viles

Jill Dopf Viles was an American writer and medical researcher recognized for her self-diagnosis of Emery-Dreifuss muscular dystrophy. She also conducted scientific research on the disease and was instrumental in diagnosing the disease in Canadian Olympic athlete Priscilla Lopes-Schliep.

Early life and education Jill Viles was born in Des Moines, Iowa, in 1974, the eldest of five children. Other members of the family also exhibited elevated creatine kinase levels, an enzyme that leaks out of damaged muscles, but only Jill experienced such difficulty with walking. It was here that Viles supplemented her understanding of molecular biology. Viles in particular had a point mutation within the lamin gene, where a cytosine nucleotide was replaced with a guanine nucleotide.

Partial lipodystrophy After news of her self-diagnosis spread, Viles was offered a summer internship at Johns Hopkins University at the age of 25. It was here that she read of another rare genetic disease, partial lipodystrophy. In 2016, Viles reached out to David Epstein, journalist and author of "The Sports Gene: Inside the Science of Extraordinary Athletic Performance," after his appearance on Good Morning America in 2016. Lopes-Schliep's nuclear membrane exhibited invagination and a non-circular shape, while Viles' variant in the lamin gene resulted in a rounded oval nucleus with highly disorganized genetic material in the cell cytoplasm.

Writing experience Aside from her research in the science field, Jill Viles also spent time writing books and articles to raise awareness about her condition and share her journey. Viles earned her master’s degree in creative writing from Iowa State University, her writing has appeared in Johns Hopkins Magazine, and her essay, “Loss of Control”, was recognized in the 88th Annual Writer’s Digest Writing Competition.

Publications