There came a boy of healthy look and 14 years of age, to ask of us at The Hospital, what should be done to cure him of many large swellings on his back which began about three years since, and have continued to grow as large on many parts as a penny-loaf, particularly on the left side. The first case of FOP may have been described by Guy Patin in 1692 ( 4), but the first unequivocal description of FOP was recorded in the philosophical transactions of The Royal Society of London in 1740 by John Freke, a London surgeon and friend of Fielding who mentioned him in the novel Tom Jones. At the present time, there is no effective prevention or treatment ( 2, 3). Any attempt to remove this heterotopic bone leads to episodes of explosive new bone growth. Ribbons, sheets, and plates of heterotopic bone seize the body’s joints, and relegate its victims to a state of permanent and lifelong immobility. Soon, the children succumb to progressive waves of ectopic osteogenesis that transform the body’s soft tissue connective tissues into an armament like encasement of bone.
The childhood victims of this musculoskeletal sabotage seem ostensibly normal at birth except for telltale malformations of the great toe. Rather, it is a reality so stark, sobering, and inescapable, that it transcends the imagination ( 2). Anyone familiar with both the arresting images of “ The Captives” and the nightmarish reality of fibrodysplasia ossificans progressiva (FOP) will immediately see a haunting similarity.
“The more the marble wastes, the more the statue grows,” wrote Michaelangelo, thus framing the debate over “ The Captives,” his unfinished marble sculptures of human beings struggling to extricate themselves from eternal captivity. The Biblical account of Lot’s wife, the stark images of Michelangelo’s captives, and the haunting story of Kafka’s Metamorphosis subtend the story of fibrodysplasia ossificans progressiva (FOP), but the real origins of the condition in human history are shrouded in mystery ( 1, 2).