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A disease apart: Leprosy in the modern world

2006; Elsevier BV; Volume: 56; Issue: 1 Linguagem: Inglês

10.1016/j.jaad.2006.06.015

1097-6787

Scott A. Norton,

History of Science and Medicine

Perhaps no human condition has evoked more myth and metaphor than leprosy. In A disease apart: Leprosy in the modern world, Tony Gould explores leprosy's modern history—the factual basis for leprosy's position in metaphor and allegory. The book has fourteen chapters and abundant black-and-white illustrations. Each chapter tells a story that largely stands alone. One of the major themes throughout the book is the historical debate on the transmission of the disease—whether it was an infectious or an inheritable disease. Leprosy often appeared in clusters, frequently within a co-dwelling family. Some workers inferred that the disease spread from person to person; others viewed the family clusters as indicative of an inherited disease. On the other hand, Sir Jonathan Hutchinson (known for his teeth, pupil, freckle, and other body parts) insisted that leprosy was caused by eating spoiled fish. At the same time, the medical superintendent of the leprosy hospital in Honolulu promulgated the idea that leprosy was the fourth stage of syphilis. A host of theories regarding leprosy abounded, and here Gould places them in historical context. Beliefs about the etiology and transmission of leprosy influenced policies on the segregation and isolation of lepers. Leper colonies, leprosaria, lazarettos, and pest houses were established widely and practiced a spectrum of methods to prevent the disease from spreading to uninfected individuals. At some sites, spouses and other family members were allowed to accompany the patient; at other sites, patients underwent compulsory sterilization to prevent possible parent-to-child transmission. Elsewhere, men and women lived in separate colonies in an effort to prevent reproduction, and still elsewhere married couples could live together but any children were removed soon after birth to protect them from catching their parents' diseases. In China, an occasional alternative to segregating lepers was to conduct periodic massacres of the residents of leper colonies. The classic tale of resistance to segregation is Jack London's retelling of the story of Ko‘olau, a Hawaiian leper sent to Kalaupapa, the leprosarium on the rugged north coast of Moloka‘i. Ko‘olau escaped, was caught, and was then returned to the leprosarium. He escaped again and fled to the rugged, nearly inaccessible Kalalau Valley on Kaua‘i. Deputy Sheriff Stolz launched a manhunt, chasing him through the precipitous slopes of Kalalau Valley. Stolz and Ko‘olau engaged in a deadly game of hide and seek, immortalized in London's story Ko‘olau the Leper and further explained in Gould's book. A fascinating theme running through the book is what Gould calls the “tropistic attraction of leprosy for organized religions.” He remarks that there are no missionary clinics dedicated to consumptives, diabetics, or syphilitics, but there seems to be some special reward for working with “lepers.” In Graham Greene's book A Burnt-Out Case, set in the Congo, a physician and priest discuss this topic, which the doctor calls leprophilia: “You know that leprophils exist, though I daresay they are more often women than men. Schweitzer seems to attract them. They would rather wash [diseased] feet with their hair … than clean them with something more antiseptic … . When D.D.S. [dapsone] was discovered to be a cure [and most patients were allowed to leave leprosy hospital,] one of the nuns said to me, ‘It's terrible doctor. Soon we'll have no lepers at all.’ There surely was a leprophil.” Gould recounts the stories of a number of leprophiles, a particularly unusual one being Kate Marsden. She was a peripatetic traveler who lived among yurt-dwelling peoples of northeastern Siberia and other scattered obscure places, in search of lepers. On several occasions, her passions—leprophilia and other philias—led to her being declared persona non grata. Gould tells us about the research methods of Daniel Danielssen, the father of modern leprology, who after observing that leprosy often occurred in families, became convinced that the disease was hereditary, not communicable. Danielssen tested his thesis by inoculating himself several times with leprous matter. His pupil, Gerhard Hansen, who identified the lepra bacillus under the microscope, conducted similar experiments. In one of his studies, however, he inoculated materials from a lepromatous patient into a woman's eye and wound up in court—a suitable consequence even in the days before there were requirements to obtain a patient's consent. Another anecdote related the fortuitous turn of events early in World War II after the Japanese Army invaded the Philippines but superstitiously avoided the leper colony at Culion, near Manila. Consequently, during the War, Culion served as a safe zone for Filipino resistance fighters. Other personae in the pageant of leprosy include Father Damien, who has been beatified by the Catholic Church, comes across as a bit more human than saintly. Then there are the American soldiers who returned home from the Philippines after the Spanish-American War, taking with them more than just war stories. From Carville, we learn of the Jewish pharmacist from San Antonio who acquired leprosy as a young man. He served for decades as editor of the Star, a leprosy newsletter printed at Carville. Although befriended by the likes of Tallulah Bankhead, he wrote under the pseudonym of Stanley Stein so as to not put undue stress on his estranged family in Texas. Any history of leprosy must conclude with the significant events of the past 50 years—the advent of sulfone antibiotics, the decline of leprosaria, the de-ostracization of people with the disease. Amazingly, Japan didn't repeal the last of its compulsory segregation laws until 2001. This book was originally published in England under the title Don't Fence Me In: Leprosy in Modern Times, but the publisher chose a different title for an American audience. A pity—for “Don't Fence Me In” is the title of a Cole Porter song that Carville residents chose as their unofficial anthem. Dermatologists with an established interest in the social, rather than medical, consequences of leprosy will find this a worthwhile book to read, but not necessarily to own. Dermatologists who haven't thought much about such topics should start with the novel Moloka‘i, by Alan Brennert.