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A Disease Apart: Leprosy in the Modern World
 
 
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A Disease Apart: Leprosy in the Modern World [Hardcover]

Tony Gould (Author)
4.6 out of 5 stars  See all reviews (5 customer reviews)


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Hardcover, August 25, 2005 --  

Book Description

August 25, 2005 0312305028 978-0312305024 First Edition
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.


Editorial Reviews

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

Product Details

  • Hardcover: 432 pages
  • Publisher: St. Martin's Press; First Edition edition (August 25, 2005)
  • Language: English
  • ISBN-10: 0312305028
  • ISBN-13: 978-0312305024
  • Product Dimensions: 9.1 x 6.1 x 1.3 inches
  • Shipping Weight: 1.6 pounds
  • Average Customer Review: 4.6 out of 5 stars  See all reviews (5 customer reviews)
  • Amazon Best Sellers Rank: #1,671,993 in Books (See Top 100 in Books)

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6 of 6 people found the following review helpful:
5.0 out of 5 stars A Special Disease, September 11, 2005
This review is from: A Disease Apart: Leprosy in the Modern World (Hardcover)
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.
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2 of 2 people found the following review helpful:
5.0 out of 5 stars Leprosy: not just a bygone disease, April 22, 2006
This review is from: A Disease Apart: Leprosy in the Modern World (Hardcover)
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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3.0 out of 5 stars politics, not medicine, June 27, 2009
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This review is from: A Disease Apart: Leprosy in the Modern World (Hardcover)
This is a thoroughly researched book, to the point of excruciatingly boring detail, that discusses the social and political implications of leprosy throughout history. There is very little discussion of the medical side of the disease, of which the author doesn't seem to have much grasp - A glaring omission considering that we hear far more than we need to about the personal lives of leading leprosy researchers, celebrity sufferers, and government administrators. There were some bizarre throwaway lines such as "Biblical leprosy was probably a different disease than true leprosy". Huh? I can accept that provided there was some explanation / validation. (which wasn't done). There is no discussion at all about leprosy medical research except for some faint condemnation about the cushy dwellings of researchers in leper colonies compared to the dreadful living conditions of the patients. This is not a book to be taken lightly - it's far too complex, and meandering, for a quick run-through. Read it if you like politics more than medicine. Otherwise, expect to be put to sleep (as I was, repeatedly).
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Inside This Book (learn more)
First Sentence:
Leprosy is generally categorised as a tropical disease. Read the first page
Key Phrases - Capitalized Phrases (CAPs): (learn more)
United States, Stanley Stein, Father Damien, Board of Health, New York, John Early, New Orleans, Surgeon General, Betty Martin, South Africa, Leonard Wood, Ministry of Health, Kate Marsden, New Brunswick, Peter Greave, Sisters of Charity, Miss Marsden, Ned Langford, Hannah Riddell, International Congress of Leprology, Mother Marianne, Robert Cochrane, Roman Catholic, Second World War, Sungei Buloh
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