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A Disease Apart: Leprosy in the Modern World
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 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 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 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.
It is a condition shrouded for centuries in mystery, legend, and religious fanaticism. Societies the world over have vilified its 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 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 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.
420 pages, Hardcover
First published January 1, 2005
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Displaying 1 - 10 of 10 reviews
January 11, 2012
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.
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.
October 25, 2009
My family says I am morbid but I'm now wanting to tour The National Hansen's Disease Museum in Carville, LA. This book was fascinating to me and unfortunately the story of leprosy seems to overlap with the early years of AIDS as far as fear of the unknown and how that led to the illness often being considered evidence of moral sin.
March 31, 2026
As Darryl has fully summarized this book, I will only add my reflections.
This is the third book about leprosy I have read in a few months after being intrigued by the subject from reading "In the Sanctuary of Outcasts", a book I randomly found at a Little Library.
It was an intriguing read, looking around the world seeing how leprosy affected different populations. The argument from government and their health institutions was surprisingly similar in their approaches to the public health aspects of leprosy, regardless of the vast differences in culture and resources.
The biggest argument was whether to isolate people with leprosy, to what extent, and to what extent their families would or could be included. Fascinating also was the inter play between religious helpers and the government agendas.
One of the fascinating aspects of this disease, although there are strong parallels with other infectious diseases, is the difficulty understanding the mode of transmission and how challenging it was to find an effective treatment. This negatively impacted most of the countries in how they approached the public health aspects of the disease. As is often the case with diseases like leprosy, there was considerable lag time between scientific discoveries about the disease and public policy and understanding by the public.
The book reveals how, across the board, those with leprosy were treated so very poorly, given almost no resources for living a quality of life; dreadful living conditions in the extreme.
I was surprised that leprosy persists, as it is a disease of poverty to a great extent. New cases are ever present, even in first world countries.
Also interesting to learn about the players who did so much to positively influence the care and cures for those with leprosy.
Interesting to note that it appears to historians that St Francis of Assisi was suffering from leprosy.
I appreciated the author's writing, however it could have used a bit more editing as some aspects seemed unnecessarily detailed. The book is extremely well referenced, and one could continue deep diving into this topic for a long time, which I may do!
This is the third book about leprosy I have read in a few months after being intrigued by the subject from reading "In the Sanctuary of Outcasts", a book I randomly found at a Little Library.
It was an intriguing read, looking around the world seeing how leprosy affected different populations. The argument from government and their health institutions was surprisingly similar in their approaches to the public health aspects of leprosy, regardless of the vast differences in culture and resources.
The biggest argument was whether to isolate people with leprosy, to what extent, and to what extent their families would or could be included. Fascinating also was the inter play between religious helpers and the government agendas.
One of the fascinating aspects of this disease, although there are strong parallels with other infectious diseases, is the difficulty understanding the mode of transmission and how challenging it was to find an effective treatment. This negatively impacted most of the countries in how they approached the public health aspects of the disease. As is often the case with diseases like leprosy, there was considerable lag time between scientific discoveries about the disease and public policy and understanding by the public.
The book reveals how, across the board, those with leprosy were treated so very poorly, given almost no resources for living a quality of life; dreadful living conditions in the extreme.
I was surprised that leprosy persists, as it is a disease of poverty to a great extent. New cases are ever present, even in first world countries.
Also interesting to learn about the players who did so much to positively influence the care and cures for those with leprosy.
Interesting to note that it appears to historians that St Francis of Assisi was suffering from leprosy.
I appreciated the author's writing, however it could have used a bit more editing as some aspects seemed unnecessarily detailed. The book is extremely well referenced, and one could continue deep diving into this topic for a long time, which I may do!
May 11, 2018
Reading up on Kalaupapa, the leprosy settlement on Moloka'i led me to this thorough and well-researched book about the disease itself.
After writing a book about polio (which he contracted as a child) he went on to write this history of leprosy, now called Hansen's Disease after the doctor who first isolated the bacteria that cases it. Leprosy is such an interesting disease, both historically and medically. In many ways it is unlike any other.
He starts with theories on the origin of the disease and the way its references in the Bible shaped the way Western cultures saw it. He brings the reader through the Middle Ages and then to the era of separation. There has been (and is still) a tension between whether to separate Hansen's Disease patients from the rest of society or whether the threat of expulsion does ultimately more damage by discouraging disclosure.
Gould discusses the different way cultures around the world have treated Hansen's Disease and its sufferers. He also mentions the major settlements and how many of them reflected the colonial mores of the time. This book is informative while also being interesting to read. Gould includes many facts as well as personal stories. I am looking forward to reading his book about polio someday.
After writing a book about polio (which he contracted as a child) he went on to write this history of leprosy, now called Hansen's Disease after the doctor who first isolated the bacteria that cases it. Leprosy is such an interesting disease, both historically and medically. In many ways it is unlike any other.
He starts with theories on the origin of the disease and the way its references in the Bible shaped the way Western cultures saw it. He brings the reader through the Middle Ages and then to the era of separation. There has been (and is still) a tension between whether to separate Hansen's Disease patients from the rest of society or whether the threat of expulsion does ultimately more damage by discouraging disclosure.
Gould discusses the different way cultures around the world have treated Hansen's Disease and its sufferers. He also mentions the major settlements and how many of them reflected the colonial mores of the time. This book is informative while also being interesting to read. Gould includes many facts as well as personal stories. I am looking forward to reading his book about polio someday.
June 17, 2017
Maybe I just have a short attention span, but there must have been a way to condense most of the information and history?
August 13, 2010
I don't know a lot about leprosy, but after hearing someone speak at church on modern leprosy I thought I would find out more. This was a great introduction to how leprosy has been treated, and was even more insightful when I read about Molokai, Hawaii near my recent vacation. It was dry reading at times, and I read it over many weeks.
June 3, 2007
read it for a class project
a thorough history but drags a little for my taste
a thorough history but drags a little for my taste
April 1, 2008
Very interesting read.
January 27, 2016
An excellent book.
April 2, 2008
Intriguing history of a forgotten disease and the many who gave everything to fight it.
Displaying 1 - 10 of 10 reviews