Medicine and society: Neurofibromatosis and a portrait of 1 in 3000

Abstract

Neurofibromatosis, a genetic disorder that occurs in 1 in 3000 births, can cause tumors to grow anywhere on or in the body. The first author (RM), an artist-researcher and mother of a son living with neurofibromatosis, has painted and exhibited more than 200 portraits of people living with neurofibromatosis to raise awareness of and resources for this little-known disorder. Among many stories shared through RM's works is the story of Ashok, a Nepali man who has undergone 3 surgeries to remove facially disfiguring tumors that developed as a result of neurofibromatosis. This article analyzes portraits of Ashok and interviews that the senior author (RI) conducted with Ashok and RM during each phase of his surgical process to present a case study of their lived experience at the intersection of art and medicine that illustrates the power of portraiture as medicine.