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A Disease Apart: Leprosy in the Modern World, by Tony Gould
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This fascinating cultural and medical history of leprosy enriches our understanding of a still-feared biblical disease.
It is a condition shrouded for centuries in mystery, legend, and religious fanaticism. Societies the world over have vilified its sufferers: by the sheer accident of mycobacterial infection, they have been condemned to exile and imprisonment—illness itself considered evidence of moral taint.
Over the last 200 years, the story of leprosy has witnessed dramatic reversals in terms of both scientific theory and public opinion. In A DISEASE APART, Tony Gould traces the history of this compelling period through the lives of individual men and women: intrepid doctors, researchers, and missionaries, and a vast spectrum of patients.
We meet such pioneers of treatment as the Norwegian microbe hunter, Armauer Hansen. Though Hansen discovered the leprosy bacillus in l873, the 'heredity vs. contagion' debate raged on for decades. Meanwhile, across the world, Belgian Catholic missionary Father Damien became an international celebrity tending to his stricken flock at the Hawaiian settlement of Molokai. He contracted the disease himself. To the British, leprosy posed an "imperial danger" to their sprawling colonial system. In the l920s Sir Leonard Rogers of the Indian Medical Service found that the ancient Hindu treatment of chaulmoogra oil could be used in an injectable form.
The Cajun bayou saw the inspiring rise of leprosy's most zealous campaigner of all: a patient. At Carville, Louisiana, a Jewish Texan pharmacist named Stanley Stein was transformed by leprosy into an eloquent editor and writer. He ultimately became a thorn in the side of the U.S. Public Heath Department and a close friend of Tallulah Bankhead.
The personalities met on this journey are remarkable and their stories unfold against the backgrounds of Norway, Hawaii, the Philippines, Japan, South Africa, Canada, Nigeria, Nepal and Louisiana. Although since the l950s drugs treatments have been able to cure cases caught early—and arrest advanced cases—leprosy remains a subject mired in ignorance.
In this superb and enlightened book, Tony Gould throws light into the shadows.
- Sales Rank: #764403 in eBooks
- Published on: 2014-10-07
- Released on: 2014-10-07
- Format: Kindle eBook
From Booklist
For millennia, sufferers of Hansen's disease, commonly known as leprosy, have endured not only the illness' devastating effects but also unspeakable cruelty at the hands of those around them. Indeed, some of the worst offenders have been those charged with caring for the afflicted. Gould says it is the combination of leprosy's mysterious causes and its horrific physical manifestations that inspires such behavior. In this thoughtful book, he traces leprosy's recent history by examining the lives of people who have made a difference, ranging from household names like Father Damien to such lesser-known heroes as Stanley Stein, who waged a victorious battle against the U.S. Public Health Service. Despite what appear to be great strides--the author cites leprosarium closures from declining incidence of the disease in industrialized nations--Gould claims the battle is far from over. For there is no cure, no preventive vaccine, nor any good idea yet as to either cause or how leprosy is spread. Moreover, leprosy still occurs in many areas of the Third World. Donna Chavez
Copyright © American Library Association. All rights reserved
Review
‘Tony Gould’s book sheds light on this most maligned and misunderstood of diseases” –Financial Times
“Absorbing and even inspiring . . .thought-provoking and moving. [A Disease Apart] deserves the widest possible circulation among doctors and laymen alike” –Spectator
“Tony Gould’s new study, beautifully written and constructed with craftsmanlike care, presents the people and the arguments of the past two centuries in sharp relief” –New Statesman
‘The history of leprosy, as Tony Gould makes clear in his exhaustive book, is in many ways the history of man’s inhumanity to man … Missionaries often proved the most enlightened, humane leprosy workers, and to these Gould pays full and colorful tribute” –Daily Telegraph
“[An] excellent book . . . Writing in a lively, engaging style capable of encompassing the intricacies of medical politics, [Gould] gives a real sense of what it meant to be a patient with leprosy well into the twentieth century.” –Guardian
“Compelling … his main subject was not so much the disease but an extended meditation on human goodness … it is a most uplifting story beautifully told” –Sunday Telegraph
About the Author
TONY GOULD served in the British military, then studied English at Cambridge. He has worked as a BBC radio producer and as literary editor of New Society and the New Statesman. His books include A Summer Plague: Polio and Its Survivors and Inside Outsider: The Life and Times of Colin MacInnes, winner of the 1984 PEN Silver Pen award.
Most helpful customer reviews
8 of 9 people found the following review helpful.
A Special Disease
By Rob Hardy
Everyone knows what you mean if you refer to someone as a leper: someone others shun. There are worse diseases, more painful ones, more numerous ones, and many more contagious ones, but leprosy was a horror of its own. This was largely because leprosy was visible; blotchy skin, bloated face, extremities dissolving away. Lepers had more problems in that they lost their sight, but more particularly they lost their sense of touch, and with it the capacity to feel pain, the blessing in disguise that protects us from the world's blows. It is a terrible disease, but the horror it inspired in others made it unique. In _A Disease Apart: Leprosy in the Modern World_ (St. Martin's Press), Tony Gould shows that in the past couple of hundred years, the disease has lost its capacity to shock. It still exists, but there are good treatments and we know that sufferers need not be objects of fear or horror, and that they are certainly not victims of some sort of curse from gods of any type. Gould has not pointedly drawn comparisons to AIDS in our own time, but the similar arc of social reaction to the disease is clear.
Much of what people know about leprosy comes from the Bible, and it certainly inspired the missionaries in their efforts against the disease, but probably those missionaries were fighting a different one than that known in Old Testament times and locales. The involvement of Christianity by means of missionaries to sufferers is a theme throughout this book. One victim himself wrote, "There is no mission to the tubercular, no mission to the diabetics, no mission to syphilitics.... there seems to be some special reward for working with 'lepers'." Such missions are not now fashionable, and we know missionaries are not an unalloyed force for good. Gould has focused in on one region after another to tell histories that all include the cruel management of sufferers and the eventual freeing of them to more enlightened ways. Perhaps the most famous is Father Damien, the Belgian priest who ministered to lepers in Hawaii from 1873 to his death from leprosy in 1889. An American Protestant missionary met him there, and wrote a private posthumous letter critical of Father Damien ("He was not a pure man in his relations with women, and the leprosy of which he died should be attributed to his vices and carelessness.") which the recipient published. Damien's cause was taken up by another previous visitor to Molokai, none other than Robert Louis Stevenson. The controversy only swelled interest in the colony and made Damien a martyr and a figurehead for fundraising.
Leper colonies were not only in far away, impoverished places full of people with dark skin. The American version was in a lovely place, if a little swampy, called Carville, Louisiana. Huge oaks, songbirds, and gorgeous flowering trees made it a place of inspiring natural beauty. "It should have been a tonic to the soul. Except that we were fenced in." So wrote Stanley Stein, a Jewish pharmacist from Texas who edited the patients' publication _The Star_. He was the bane of the U.S. Public Health Service, always campaigning in a spirited American fashion for more rights. The campaign worked, as gradually patients were allowed more time on the outside, and the fences that had held them were taken down. Stein became a star himself, touring the country and hobnobbing with the likes of Tallulah Bankhead. He died in 1967, but Carville still exists as does his paper. The facility was formally closed as a leprosarium in 1999, but some with the disease still live there; having been isolated all their lives, they fear trying to live in the outside world, although they could do so with which much less stigma due to Stein's campaign. Gould shows that this has been the pattern in one locale after another as scientific evaluation of leprosy as a disease has shown that it isn't anything more than a disease, and not a very dangerous one at that, especially now. There is a contradiction, though, in that sufferers and healers who insist that it is just a disease are taking away its special status. The special status may have been founded on fear, but take it away and the focus on treatment and rehabilitation may be lost, especially in poor countries with other diseases to fight. It is one of the many paradoxes in an engaging and moving book.
4 of 4 people found the following review helpful.
A valuable addition to the history of leprosy in modern history
By Darryl R. Morris
In A Disease Apart, Tony Gould describes the history of leprosy, also known as Hansen's disease, over the past 200 years, with a focus on the devastating effects of the disease, the often inhumane conditions in which people infected with Mycobacterium leprae were forced to live, and selected missionaries, physicians and especially patients themselves whose efforts led to improved care and living conditions for people afflicted with leprosy worldwide.
Leprosy has been a feared illness since antiquity, due to the havoc it wreaks upon the body. Unlike infections or illnesses that ravage internal organs, such as its closely related cousin tuberculosis, which is caused by Mycobacterium tuberculosis, leprosy preferentially infects cooler parts of the body, particularly as the fingers, toes, eyes, nose and testes. The immune system's response to the infection often leads to an intense inflammatory response, which causes severe damage to the superficial nerves in these areas, leading to peripheral neuropathy. As a result, the afflicted person progressively loses sensation in these areas, which ultimately leads to tissue breakdown, ulceration and bacterial superinfection, followed by the loss of fingers and toes, destruction of the structure of the nose, and, in some cases, blindness.
Leprosy remains the most common infection that leads to disability, and its elimination has proven to be difficult, with nearly 250,000 new cases worldwide annually, including approximately 100 new cases in the United States each year. The prevalence (total number of cases) has declined dramatically, due to the introduction of the antibiotic dapsone in the 1940s, widespread distribution of the BCG vaccine for tuberculosis (which also provides protection against Mycobacterium leprae), free distribution of multidrug therapy to all newly diagnosed patients worldwide, and improved recognition and diagnostic techniques. However, in recent years, the incidence (the number of new cases) has not changed significantly. Leprosy is a disease of poverty, and 90% of cases occur in the poorest regions of Brazil, Madagascar, Mozambique, Tanzania and Nepal, which suffer from poor health care and access to medical resources. One to two million people are permanently disabled by the disease, many of whom continue to suffer from ostracism and inadequate care.
In the pre-antibiotic era, the most successful technique to prevent the spread of leprosy was compulsory segregation of those afflicted with the disease. Due largely to the fear of transmission of the disease to healthy individuals, people infected with leprosy were treated as badly if not worse than criminals: they were housed in the most decrepit settlements, which were often ringed with walls and barbed wires, with no protection from the elements, inadequate food and water, and little if any medical care. Those who sought to leave the leprosariums were hunted down like escaped convicts, and forcibly returned. In some extreme cases, the afflicted were gathered under false pretenses, and shot or burned alive en masse.
Gould thoroughly though repetitively describes the barbarous treatment that people infected with leprosy received in countries throughout the world, which differed little from one country to the next, particularly in the 19th and early 20th centuries. The strongest sections of the book are those in which he recounts the lives of those who sacrificed and dedicated their lives to the improvement of leprosy sufferers, particularly Father Damien, a Roman Catholic priest from Belgium who ministered to the colony of lepers in Molokai, Hawai'i before succumbing to the illness himself; John Ruskin Early, a leprous 'religious fanatic, a bigot, and exhibitionist' who tormented public health and government officials with his 'psychotic' behavior, but who also was instrumental in the creation of the national hospital for leprosy victims in Carville, Louisiana; and Stanley Stein, a long term resident at Carville, whose newspaper and frequent articles about the conditions there led to greater public awareness and government support for the disease and its sufferers.
A Disease Apart is a valuable addition to the history of medicine, which describes past and present challenges to the care of those afflicted with leprosy. Although written for the lay public it would be of most interest to those who have a strong interest in the disease or the individuals who were most influential in the advances made in its treatment.
4 of 4 people found the following review helpful.
Leprosy: not just a bygone disease
By D. Donovan, Editor/Sr. Reviewer
Hear the world 'leprosy' and you tend to think of bygone eras and diseases no longer threatening modern societies - but A DISEASE APART: LEPROSY IN THE MODERN WORLD shows otherwise, tracing the history of leprosy and surveying the legends, realities, and medical concerns surrounding the disease. From pioneers of early treatments and diagnosis to local epidemics of leprosy, chapters survey the controversies, research, and health risks which have surrounded leprosy. Treatments for cases caught early have been in effect since the 1950s - but there's still lots of misunderstanding and myth surrounding leprosy - and thus the need for this detailed medical history.
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