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Carville's Cure: Leprosy, Stigma, and the Fight for Justice
The Mississippi River between Baton Rouge and New Orleans curls around an old sugar plantation that long housed one of America’s most painful secrets. Locals knew it as Carville, the site of the only leprosy colony in the continental United States, where generations of afflicted Americans were isolated—often against their will and until their deaths.
Following the trail of an unexpected family connection, acclaimed journalist Pam Fessler has unearthed the lost world of the patients, nurses, doctors, and researchers at Carville who struggled for over a century to eradicate Hansen’s disease, the modern name for leprosy. Amid widespread public anxiety about foreign contamination and contagion, patients were deprived of basic rights—denied the right to vote, restricted from leaving Carville, and often forbidden from contact with their own parents or children. Neighbors fretted over their presence and newspapers warned of their dangerous condition, which was seen as a biblical “curse” rather than a medical diagnosis.
Though shunned by their fellow Americans, patients surprisingly made Carville more a refuge than a prison. Many carved out meaningful lives, building a vibrant community and finding solace, brotherhood, and even love behind the barbed-wire fence that surrounded them. Among the memorable figures we meet in Fessler’s masterful narrative are John Early, a pioneering crusader for patients’ rights, and the unlucky Landry siblings—all five of whom eventually called Carville home—as well as a butcher from New York, a 19-year-old debutante from New Orleans, and a pharmacist from Texas who became the voice of Carville around the world. Though Jim Crow reigned in the South and racial animus prevailed elsewhere, Carville took in people of all faiths, colors, and backgrounds. Aided by their heroic caretakers, patients rallied to find a cure for Hansen’s disease and to fight the insidious stigma that surrounded it.
Weaving together a wealth of archival material with original interviews as well as firsthand accounts from her own family, Fessler has created an enthralling account of a lost American history. In our new age of infectious disease, Carville’s Cure demonstrates the necessity of combating misinformation and stigma if we hope to control the spread of illness without demonizing victims and needlessly destroying lives.
Following the trail of an unexpected family connection, acclaimed journalist Pam Fessler has unearthed the lost world of the patients, nurses, doctors, and researchers at Carville who struggled for over a century to eradicate Hansen’s disease, the modern name for leprosy. Amid widespread public anxiety about foreign contamination and contagion, patients were deprived of basic rights—denied the right to vote, restricted from leaving Carville, and often forbidden from contact with their own parents or children. Neighbors fretted over their presence and newspapers warned of their dangerous condition, which was seen as a biblical “curse” rather than a medical diagnosis.
Though shunned by their fellow Americans, patients surprisingly made Carville more a refuge than a prison. Many carved out meaningful lives, building a vibrant community and finding solace, brotherhood, and even love behind the barbed-wire fence that surrounded them. Among the memorable figures we meet in Fessler’s masterful narrative are John Early, a pioneering crusader for patients’ rights, and the unlucky Landry siblings—all five of whom eventually called Carville home—as well as a butcher from New York, a 19-year-old debutante from New Orleans, and a pharmacist from Texas who became the voice of Carville around the world. Though Jim Crow reigned in the South and racial animus prevailed elsewhere, Carville took in people of all faiths, colors, and backgrounds. Aided by their heroic caretakers, patients rallied to find a cure for Hansen’s disease and to fight the insidious stigma that surrounded it.
Weaving together a wealth of archival material with original interviews as well as firsthand accounts from her own family, Fessler has created an enthralling account of a lost American history. In our new age of infectious disease, Carville’s Cure demonstrates the necessity of combating misinformation and stigma if we hope to control the spread of illness without demonizing victims and needlessly destroying lives.
352 pages, Hardcover
First published July 14, 2020
151 people are currently reading
1700 people want to read
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Displaying 1 - 30 of 118 reviews
August 31, 2020
Do you know what Hansen's Disease is?.......maybe. Do you know what Leprosy is?......absolutely. The "unclean, sinful" disease that is usually identified with Africa and other hot, humid countries......again that is the wrong answer. The United States still has the disease, although not in great numbers and is still mysterious as to cause. The treatment was not discovered until the late 20th century and there is still no cure.
This excellent book follows the spread of the disease in the US and how people who suffered from it were treated. It will chill you to realize that they were treated as criminals and put on isolated islands, separated from their families, usually for the rest of their lives, and living in filth. Eventually, a leprosarium was built in Carville, Louisiana on the grounds of an old plantations. People with Hansen's Disease (lepers) were transported there, often in chains or box cars. In many instances, the individual didn't even have the disease but if a doctor had a patient who developed some lesions or numbness of the hands or feet was immediately classified as "leper" and was sent to Carville.
This history follows the development of Carville from a filthy prison to a decent home for those ill with Hansen's Disease where the patients had small houses or dormitories and a society of those who resided there had baseball teams, an orchestra, parades, etc. They became a family and when some, who were tested negative and allowed to leave, continued to live there.
There is so much to tell about this book that a review would be another book in itself. It is not easy to read without feeling disgust at the attitudes that surrounded Hansen's disease.
Highly recommended.
This excellent book follows the spread of the disease in the US and how people who suffered from it were treated. It will chill you to realize that they were treated as criminals and put on isolated islands, separated from their families, usually for the rest of their lives, and living in filth. Eventually, a leprosarium was built in Carville, Louisiana on the grounds of an old plantations. People with Hansen's Disease (lepers) were transported there, often in chains or box cars. In many instances, the individual didn't even have the disease but if a doctor had a patient who developed some lesions or numbness of the hands or feet was immediately classified as "leper" and was sent to Carville.
This history follows the development of Carville from a filthy prison to a decent home for those ill with Hansen's Disease where the patients had small houses or dormitories and a society of those who resided there had baseball teams, an orchestra, parades, etc. They became a family and when some, who were tested negative and allowed to leave, continued to live there.
There is so much to tell about this book that a review would be another book in itself. It is not easy to read without feeling disgust at the attitudes that surrounded Hansen's disease.
Highly recommended.
March 5, 2020
Yes, I know I'm the author so I'm a bit biased. But, I've been pleasantly surprised by the great feedback I've been getting from early readers. So, even if you THINK you might not want to read a book about leprosy, you do! That's because there are so many wonderful characters, people who show extraordinary resilience fighting against one of the world's oldest stigmas and most misunderstood diseases. There are also important lessons for today, as we deal with the outbreak of new, far more deadly, infectious diseases. I think reading this book would be well worth your time. And, seriously, would I steer you wrong?
October 30, 2020
A fascinating, engrossing story of the only leprosy colony in the continental United States, and the thousands of Americans who were cruelly and unnecessarily exiled. Fessler's well-researched, articulate account humanizes sufferers and caregivers alike.
January 20, 2020
Beautifully written and captivating from beginning to end. I couldn't put this book down.
This historical book tells the story of individuals, many of whom were veterans, who were unjustly taken from their homes and forced to live their lives isolated from the outside world and apart from their loved ones. They were deprived of freedom, self-dignity and fundamental rights. The families they left behind were scared, stigmatized and uncertain about their futures. This important story is sadly relevant today. It illustrates the long term, devastating effects of family separations on both the individuals who are taken away and those left behind. Most importantly, it serves as a cautionary tale of what happens when our government makes decisions based on fear and prejudice instead of facts.
The author masterfully intertwines historical facts with detailed, heartbreaking stories of real people whose lives were impacted by the cruel, inhumane and ignorant actions of our government officials. But it also tells the inspiring story of how these patients and their caregivers united, organized, advocated and after decades of effort were able to help find cures for their disease, educate the world about rampant misconceptions and reduce the stigma which destroyed so many of their lives. The victims in this story became heroes but the baseless stigma that devastated their lives has not yet been fully eradicated.
Because of the timing of this book’s release, it has the potential to be much more than an eloquent description of a shameful, little known part of American history. It has the potential to inspire conversation, contemplation and change. Unjustified family separations. Decisions based on stigmas and prejudice. Refusals to acknowledge scientific research. History is repeating itself. This book is a wake-up call.
Would be great for book clubs, history/civics classes, current event discussions, etc.
This historical book tells the story of individuals, many of whom were veterans, who were unjustly taken from their homes and forced to live their lives isolated from the outside world and apart from their loved ones. They were deprived of freedom, self-dignity and fundamental rights. The families they left behind were scared, stigmatized and uncertain about their futures. This important story is sadly relevant today. It illustrates the long term, devastating effects of family separations on both the individuals who are taken away and those left behind. Most importantly, it serves as a cautionary tale of what happens when our government makes decisions based on fear and prejudice instead of facts.
The author masterfully intertwines historical facts with detailed, heartbreaking stories of real people whose lives were impacted by the cruel, inhumane and ignorant actions of our government officials. But it also tells the inspiring story of how these patients and their caregivers united, organized, advocated and after decades of effort were able to help find cures for their disease, educate the world about rampant misconceptions and reduce the stigma which destroyed so many of their lives. The victims in this story became heroes but the baseless stigma that devastated their lives has not yet been fully eradicated.
Because of the timing of this book’s release, it has the potential to be much more than an eloquent description of a shameful, little known part of American history. It has the potential to inspire conversation, contemplation and change. Unjustified family separations. Decisions based on stigmas and prejudice. Refusals to acknowledge scientific research. History is repeating itself. This book is a wake-up call.
Would be great for book clubs, history/civics classes, current event discussions, etc.
July 14, 2020
Leprosy is still around and it's still unclear how it spreads; however, most people are immune to it, and it is treatable especially when it is caught early. Fessler shows how moralizing narratives about disease can override factual information. Her book begins with personal stories of those who, around the turn of the 20th century, were mistreated, confined, and even subject to nonconsensual experimentation after being diagnosed with leprosy. The book goes on to describe more successful scientific efforts to find a cure in the mid-20th century. It winds up drawing parallels with the social reaction to the emergence of HIV in the 1980s. There is a lot to consider in here regarding medical ethics and the rights of patients, and it educates readers about a disease unfamiliar to most of us.
July 23, 2020
I was a little worried picking up a book about such a depressing topic in such a depressing time, but I didn't need to be. This is a fascinating bit of medical history brought to life through personal stories about people who suffered from Leprosy and those around them. The author, an NPR reporter, focuses on the Carville residential hospital, an institution in Louisiana that became home for banished victims of the disease. There has always been a terrible stigma and a huge amount of misinformation surrounding the disease, which only makes this history that much more relevant. It's an informative and engrossing book with interesting ties to today.
January 21, 2022
I have read about the colony on Molokai, but I was unaware of a leprosarium in rural Louisiana. On an abandoned sugar plantation, patients were expected to live in run-down former slave cabins with little or no medical care. Conditions were bad. The Daughters of Charity were brought in to add nursing care and people began advocating for improvement in the facilities.
What a grim chapter in history!
Excellent research. Well-written.
What a grim chapter in history!
Excellent research. Well-written.
July 9, 2020
Excellent account of the leprosarium at Carville, LA. I had no idea that this facility existed or the traumatic lives of the people (even extremely young children) banished there upon their diagnosis of Hansen's disease (formerly known as leprosy). How terrible for these patients to feel the need to change their names so their families wouldn't be "shamed" for having a "leper" (a derogatory term) in the family!
I highly recommend this for readers interested in history - US and medical. Thank you NetGalley for my review copy.
I highly recommend this for readers interested in history - US and medical. Thank you NetGalley for my review copy.
October 19, 2020
This was fascinating and I wish I could remember where I heard of it! While this is the story of leprosy and the Carville leprosarium in Louisiana, it’s mostly about the patients and how they lived. It’s so heartbreaking in places and inspiring in others. Such a good book.
November 5, 2020
This little history of the Louisiana "leprosarium" manages to work overall, if we can step past how packed it is with individual stories from of the archives to grasp the bigger picture: that such a place functions as a microcosm of American values at their best and their worst, for nowhere could they be more highlighted than among the most marginalized humans in the country.
So much is paradoxical. The idea for a national leprosy center in part comes from the desire to help patients find a cure, but mostly from the fear-driven desire to remove and conceal them. And the patients in turn wrestled with the strictures of what was at times a prison for them, but in fact more often served as a sanctuary, and ultimately a home. From these themes alone, Fessler realizes that she can weave a fascinating story of the history of humaneness in America, one that defies easy solutions, because life's complexities continue to emerge in paradox. Doctor Gerhard Hansen, for example, had the courage of his convictions to discover and investigate the bacterium that causes leprosy, but lacked the more basic level of humaneness that would have had him ask permission before carving bacterial samples into a patient's eye. (Spoiler, a gruesome passage there!) We are left with the confusing and often intimidating sense that, while there are always people who act humanely, and nearly everyone has some sense of humanity, but in the aggregate, people seem to take one step back for every two steps forward, with fear and loathing of the Carville patients chasing them well past the early 20th century and into the decades of the 1980s and 90s when one would have thought such things could be safely retired.
Still, leprosy was cured, which goes to show that we often rely on the verifiable progress of science, medicine and technology to bolster confidence in truly human progress. It is an attractive notion, that if current fears could be put to rest, then we could all be more humane. Trouble is, new fears fling themselves up at every turn, as if the universe were sadistic. The dovetailing of the end of the leprosy story with the beginning of the AIDS story in the 1980s is particularly moving in this regard. One thinks of Emily Dickinson's sardonic tone, which as usual captures these issues in even tinier, more accurate form:
So much is paradoxical. The idea for a national leprosy center in part comes from the desire to help patients find a cure, but mostly from the fear-driven desire to remove and conceal them. And the patients in turn wrestled with the strictures of what was at times a prison for them, but in fact more often served as a sanctuary, and ultimately a home. From these themes alone, Fessler realizes that she can weave a fascinating story of the history of humaneness in America, one that defies easy solutions, because life's complexities continue to emerge in paradox. Doctor Gerhard Hansen, for example, had the courage of his convictions to discover and investigate the bacterium that causes leprosy, but lacked the more basic level of humaneness that would have had him ask permission before carving bacterial samples into a patient's eye. (Spoiler, a gruesome passage there!) We are left with the confusing and often intimidating sense that, while there are always people who act humanely, and nearly everyone has some sense of humanity, but in the aggregate, people seem to take one step back for every two steps forward, with fear and loathing of the Carville patients chasing them well past the early 20th century and into the decades of the 1980s and 90s when one would have thought such things could be safely retired.
Still, leprosy was cured, which goes to show that we often rely on the verifiable progress of science, medicine and technology to bolster confidence in truly human progress. It is an attractive notion, that if current fears could be put to rest, then we could all be more humane. Trouble is, new fears fling themselves up at every turn, as if the universe were sadistic. The dovetailing of the end of the leprosy story with the beginning of the AIDS story in the 1980s is particularly moving in this regard. One thinks of Emily Dickinson's sardonic tone, which as usual captures these issues in even tinier, more accurate form:
“Faith” is a fine invention
For Gentlemen who see!
But Microscopes are prudent
In an Emergency!
July 15, 2020
Moving, fascinating history. Highly recommend.
June 22, 2020
Why do we conjure up images of TB, or Consumption, that are romantic -- think of Mimi or Violetta or any number of operatic and literary figures -- and yet when we think of the much less contagious Hansen's Disease, or Leprosy, we are revulsed? Using her journalistic reporting and story telling skills, Pam Fessler tackles this question by focusing on Carville and its predecessor institution, both designed to separate patients from the public, and their loved ones, for the rest of their lives. Fessler was inspired to write this fascinating book when she learned that her husband's grandfather, who contracted the disease during military service in the Philippines very early in the 20th century, had suffered not only from the illness but from being separated from his loved ones and virtually imprisoned in the facility, which was located in an isolated rural area in hot and humid Louisiana. Operated by the federal government, Carville was home to the many patients who lived their lives in squalid conditions and with no hope. Removal from "normal" life to Carville was not voluntary and life there was hard on both body and soul, as we learn from the stories of individuals who spent much of their lives there. Through her study of Carville, Fessler takes us on a chronologically-based journey into the history of Hansen's Disease, the United States' approach to dealing with it, the struggle for dignity, public understanding, and, eventually, a cure. Although the disease's origins and contagiousness still are not totally understood, the dedicated work of a small group of researchers has yielded a cocktail of drugs that eliminate or reduce its effects. Fessler offers us a thoroughly researched and spell-binding story and provides yet another step towards greater awareness and understanding of the nature of this age-old disease.
June 11, 2020
Read if you: Want a moving and fascinating medical history read.
I grew up in Louisiana and vaguely heard about the Carville residential hospital, but never knew the full history until now. It was shocking to read how people with Hansen's Disease have been feared, ostracized, and stripped of their rights. Most of Carville's residents did not want to be there (and escaped or tried to escape), but they also formed an extraordinary society. They created a newspaper, advocated for their rights, celebrated Mardi Gras, and courted each other. Fessler also draws apt comparisons between the way people with Hansen's DIsease were treated (and are treated--she recounts several instances of modern day discrimination and ignorance toward Hansen's Disease in the US and other places) and the way people with AIDS were treated at the height of the AIDS pandemic. The author's grandfather-in-law was a Carville resident, and recounts her husband's journey to find out more about his grandfather (the last paragraphs of the book made me cry at 6:00 AM this morning, when I was finishing the book before heading to work.). Definitely one of the best books I've read this year.
Librarians/booksellers: Even readers who don't normally read medical history will be drawn to it.
Many thanks to W.W. Norton & Company and NetGalley for a digital review copy in exchange for an honest review.
I grew up in Louisiana and vaguely heard about the Carville residential hospital, but never knew the full history until now. It was shocking to read how people with Hansen's Disease have been feared, ostracized, and stripped of their rights. Most of Carville's residents did not want to be there (and escaped or tried to escape), but they also formed an extraordinary society. They created a newspaper, advocated for their rights, celebrated Mardi Gras, and courted each other. Fessler also draws apt comparisons between the way people with Hansen's DIsease were treated (and are treated--she recounts several instances of modern day discrimination and ignorance toward Hansen's Disease in the US and other places) and the way people with AIDS were treated at the height of the AIDS pandemic. The author's grandfather-in-law was a Carville resident, and recounts her husband's journey to find out more about his grandfather (the last paragraphs of the book made me cry at 6:00 AM this morning, when I was finishing the book before heading to work.). Definitely one of the best books I've read this year.
Librarians/booksellers: Even readers who don't normally read medical history will be drawn to it.
Many thanks to W.W. Norton & Company and NetGalley for a digital review copy in exchange for an honest review.
Read
December 2, 2019I know the author and know her research. I can't wait to read the book when it is published. It will be an important addition to the Carville story.
August 2, 2020
I enjoyed reading Pam Fessler's "Carville' Cure". This book is all about the US cultural history of Hansen's disease, formerly known as leprosy. Admittedly, I knew very little about the subject or the facility in Carville, Louisiana, prior to reading this book. Like most people, my knowledge of Hansen's disease extended to what was portrayed in the popular media, which was wildly inaccurate.
Fessler was inspired to write this book due to a family connection with the disease: one of her husband's relatives had the disease and spent time at the hospital facility in Carville, otherwise known as the national leprosarium. Fessler traces the long history of the treatment of the disease in the United States, which is both sad and tragic. It is painful to read the length to which people with the disease were shunned by society, going as far as putting their mail in an oven to try to kill every last germ. The story of Carville is a sad one, but it has a happy conclusion: after decades of research at the facility, the disease is all but cured, and the hospital is now shut down after 120 years of operation.
This is an important story that everyone should read. It reinforces the idea of what can happen when the most dangerous infection of all, that of human fear, rages like wildfire through the centuries, leaving only devastation in its wake.
Fessler was inspired to write this book due to a family connection with the disease: one of her husband's relatives had the disease and spent time at the hospital facility in Carville, otherwise known as the national leprosarium. Fessler traces the long history of the treatment of the disease in the United States, which is both sad and tragic. It is painful to read the length to which people with the disease were shunned by society, going as far as putting their mail in an oven to try to kill every last germ. The story of Carville is a sad one, but it has a happy conclusion: after decades of research at the facility, the disease is all but cured, and the hospital is now shut down after 120 years of operation.
This is an important story that everyone should read. It reinforces the idea of what can happen when the most dangerous infection of all, that of human fear, rages like wildfire through the centuries, leaving only devastation in its wake.
June 2, 2021
A brief collection of thoughts I had while reading this book:
1. Do people still get leprosy?
2. Wait, do I have leprosy?
3. Wow, I don't even know what leprosy is. And it's supposed to be called Hanson's disease? I've never even heard that.
4. Interesting how much of the stigma around leprosy is tied to inaccurate biblical stories.
5. Hmm, we never do learn when it comes to public health, do we? (See: AIDS, for example.)
6. It takes a really long time to retire hurtful language tied to another 's("an other's") lived experience. It's incredible the resonance the idea of a "leper" has in a society where less than 200 are diagnosed each year with a mildly contagious disease that 95% of us are immune to.
7. Wow, these patients rallied hard for their visibility and rights.
8. No surprise this disease got swirled into a racist panic around people trying to find asylum in the US.
9. I picked this book to listen to because I like the narrator, but it wouldn't have been on radar otherwise, and I'm glad I found this
1. Do people still get leprosy?
2. Wait, do I have leprosy?
3. Wow, I don't even know what leprosy is. And it's supposed to be called Hanson's disease? I've never even heard that.
4. Interesting how much of the stigma around leprosy is tied to inaccurate biblical stories.
5. Hmm, we never do learn when it comes to public health, do we? (See: AIDS, for example.)
6. It takes a really long time to retire hurtful language tied to another 's("an other's") lived experience. It's incredible the resonance the idea of a "leper" has in a society where less than 200 are diagnosed each year with a mildly contagious disease that 95% of us are immune to.
7. Wow, these patients rallied hard for their visibility and rights.
8. No surprise this disease got swirled into a racist panic around people trying to find asylum in the US.
9. I picked this book to listen to because I like the narrator, but it wouldn't have been on radar otherwise, and I'm glad I found this
January 5, 2021
This book is a fascinating look at a still poorly understood disease and its history in the United States. Hansen’s Disease (more commonly known as leprosy) doesn’t afflict many today, but its history is shameful for the unwarranted stigma it attached to sufferers. Biblical references gave it a thousands year headstart poisoning the minds of many. Who knew there was a hospital in Louisiana where those afflicted were shipped off to often to live out their lives alone in shame? Fessler does a terrific job detailing the history and painting detailed portraits of many individuals at the Louisiana hospital. We grow to care deeply about Stanley Stein, Betty Martin, Jose Ramirez and others. And Tallulah Bankhead even plays a role!
September 3, 2020
I really enjoyed reading this book about Leprosy. The only thing I've ever learned was from the Bible but knowing that here in the United States, Louisiana, with a stately white manor house at its heart. Locals knew it as Carville—the site of the only leprosarium in the continental United States from 1894 until 1999, where generations of afflicted Americans were isolated, often until death.
This was a very interesting read, I received an ARC for an honest review, and I say pick up a copy and read this.
This was a very interesting read, I received an ARC for an honest review, and I say pick up a copy and read this.
November 30, 2020
An interesting and important book. So hard to imagine that these things took place in living memory. I grew up hearing about Carville, including some of the stories related in this book, and had the good fortune to spend a month as a medical student here. You do get a feeling for the mixed emotions that people had about this place: horror and indignation that a place like this had to exist at all, but gratitude that it provided a place of respite and even joy for so many unfortunate people. And respect for those who tried to move the scientific treatment of Hansen's disease forward, and provide compassionate care for the patients. This includes the Daughters of Charity who worked here for many years, and the researchers and clinicians who developed treatments to benefit Hansen's disease patients (and diabetic patients) throughout the world.
May 3, 2021
I had no idea about this hidden history. The perseverance of patients at Carville, their advocacy, their want to not be social outcasts, is incredible and we can learn a lot from it. I think public health does a major disservice when the communities most impacted by an issue aren't listened to, and this is a prime example of that. The individuals featured in this book are ones whose stories will stick with me forever.
February 27, 2025
I pride myself on knowing the history of local areas. And yet, I had no idea about this place, just two states away. It started off badly, wow, what we do when we’re scared. But ended up well. I want to go visit it now. There’s a Museum and a driving tour.
August 9, 2020
A fantastic book about leprosy in the U.S., the horrific treatment of the afflicted by society, and the uplifting story of their struggle. Read it. Make it required reading in middle schools for then may attitudes truly change.
One of the "patients" was named John Early. Fessler writes:
"A visiting psychiatrist who observed Early over a three year period described him as 'hostile and suspicious...restless and agitated.' He said the patient exhibited 'delusions of persecution' and 'mental disturbance of a paranoid type not unlike the psychotic reaction of prisoners.'"
Fessler describes Early's life and experiences. He wasn't delusional, he WAS persecuted!
One of the "patients" was named John Early. Fessler writes:
"A visiting psychiatrist who observed Early over a three year period described him as 'hostile and suspicious...restless and agitated.' He said the patient exhibited 'delusions of persecution' and 'mental disturbance of a paranoid type not unlike the psychotic reaction of prisoners.'"
Fessler describes Early's life and experiences. He wasn't delusional, he WAS persecuted!
January 30, 2021
Well-researched, well-structured, well-written.
July 14, 2020
This is a fascinating, personal story as well as a meticulously researched history of a subject in which you may have thought you had no interest. This moving story of people cast out of their communities because they unknowingly contracted a disease -- and one that was not even contagious as it turns out -- resonates with much that is happening today: fear of "the other," stigmatizing the unknown and, of course, los of identity, the ravages of illness. There's no better time than a global pandemic to pick up this book. You won't be able to put it down.
October 31, 2020
In today’s world with a pandemic raging, Pam Fessler offers a fascinating look at the disease of leprosy or Hansen’s disease. She details the first national leprosarium built on an old plantation in rural Carville, Louisiana and how the first patients were often forcibly removed from their families and unable to leave the grounds once they arrived. The sigma of this almost non-contagious disease seems to appear to come mostly from the Bible where lepers are a “sign of an ‘unclean’ soul and a symptom of sin.” She explores the harmful myths about disease and injurious public health issues.
May 28, 2020
A fascinating and shocking look at how people in the U.S. who were diagnosed with leprosy, now called Hansen's Disease, were treated. Traditionally, we thought of someone who suffered from the disease as having horrible disfigurement and being cast away from society for fear of catching the disease and scaring little kids. You were a social pariah and so little was known about the progression or how the disease was passed from person to person so we locked them all up and hid them. The first "home" for lepers was opened near New Orleans in a rundown plantation in squalid conditions but over the years it grew and was modernized. The inhabitants of Carville were treated as inmates, suffering from isolation from family and spouses. Pam Fessler has done her research and has shown us the "human" side of the story as well as the scientific breakthroughs. We get to know the people who lived with it and those who tried to find a cure and fight the social stigma. For anyone that is familiar with the disease or morbidly curious as I was about so called leper colonies or is intrigued by the early social and scientific practices of controlling diseases, this book is a must. Completely readable and gut-wrenching! My thanks to the publisher for the advance copy.
August 25, 2020
An excellent book about the history the residential hospital for people with Hanson’s Disease (leprosy).in Carville, Louisiana the government established a residential hospital where for more than a hundred years people with Hanson’s disease were forced to go and live away from family and home and spend the rest of their lives in a hospital without rights or choices. Despite the dire circumstances, the residents formed a community. This is their story, a history of a misunderstood disease and the people unlucky enough to have contracted it.
September 16, 2020
This is a good place to start if you know nothing about Leprosy or Carville. Great use of resources to tell some of the personal stories of Carville and Pam makes the book even more personal with her family connection to the disease and the leprosarium.
I have read a ton of books on Leprosy and most of the literary production surrounding Carville and yet this still added a lot of new information.
I have read a ton of books on Leprosy and most of the literary production surrounding Carville and yet this still added a lot of new information.
August 11, 2020
I probably would have found this book more interesting had I come into it knowing less about Hansen’s disease (formerly known as leprosy) than I did. As it was, the book dragged quite a bit for me. The final 1/3 was by far the most interesting part. Still, overall valuable information worth knowing.
August 10, 2022
This is an amazing true story that has been novelized in another book. But it didn’t need novelization.
A Vice President of the US, Talulah Bankhead, an armadillo, Helen Keller, POW in Japanese prison camp, the Flying Nun.
What do they all have in common?
This book.
You gotta read it.
A Vice President of the US, Talulah Bankhead, an armadillo, Helen Keller, POW in Japanese prison camp, the Flying Nun.
What do they all have in common?
This book.
You gotta read it.
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