Elephant Man: Measured by the Soul is the first full-length work about the Elephant Man, Joseph Merrick, in over 20 years, featuring never-before-seen photographs, the latest research on his life, important medical information, and poignant interviews with modern-day sufferers of Proteus Syndrome.
The legend of The Elephant Man begins as he exhibits himself in a penny freakshop in Whitechapel Road, just across from the London Hospital in Victorian England. Frederick Treves, an anatomist and rising young surgeon with award-winning textbooks to his credit, ventures over to see this "Great Freak of Nature," as the garish posters announce.
Treves, drawn by a mixture of personal curiosity and professional ambition in diagnosing rare conditions of all kinds, sees something so vivid that he remembers it thirty years later, as he opens his memoirs with that first encounter with the Elephant Man. His description ranges from "the most repulsive human being" he has ever encountered to a "perverted" and "degraded" creature. He renders every detail of Merrick's condition in such graphic terms that the reader feels equally revolted. Though Treves later provides coolly clinical accounts of the young man's condition in the medical literature, later generations will recall the Elephant Man only as a monster with an appearance so terrible that "women and nervous persons fly in horror at the sight of him." Treves's photographs of his patient only reinforce that impression.
Who was the Elephant Man, and why does his story haunt us over a hundred years later? This book reveals the man behind the legend and sheds light on Proteus Syndrome, the condition he is believed to have suffered from. This condition is so rare that there are only a few hundred cases worldwide. Three of those sufferers tell their stories about living with Proteus Syndrome and why it is so urgent to give them hope for a positive prognosis, all part of the book’s multiple appendices that provide unique, emotional perspectives on Proteus Syndrome. The cause of Proteus Syndrome was discovered in 2011 by Dr. Leslie Biesecker of the National Institute of Health Human Genome Project, paving the way to new therapies and ultimate hopes for a cure.