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Lying in a hospital bed, José P. Ramirez, Jr. (b. 1948) almost lost everything because of a misunderstood disease. When the health department doctor gave him the Handbook for Persons with Leprosy, Ramirez learned his fate. Such a diagnosis in 1968 meant exile and hospitalization in the only leprosarium in the continental United States—Carville, Louisiana, 750 miles from his home in Laredo, Texas. In Squint: My Journey with Leprosy, Ramirez recalls being taken from his family in a hearse and thrown into a world filled with fear. He and his loved ones struggled against the stigma associated with the term “leper” and against beliefs that the disease was a punishment from God, that his illness was highly communicable, and that persons with Hansen's disease had to be banished from their communities. His disease not only meant separation from the girlfriend who would later become his wife, but also a derailment of all life's goals. In his struggle Ramirez overcame barriers both real and imagined and eventually became an international advocate on behalf of persons with disabilities. In Squint, titled for the sliver of a window through which persons with leprosy in medieval times were allowed to view Mass but not participate, Ramirez tells a story of love and perseverance over incredible odds.
Discusses leprosy, including causes, types, symptoms, control and treatment.
While premodern poets and preachers viewed leprosy as a “disease of the soul,” physicians in the period understood it to be a “cancer of the whole body.” In this innovative study, medical historian Luke Demaitre explores medical and social perspectives on leprosy at a time when judicious diagnosis could spare healthy people from social ostracization and help the afflicted get a license to beg. Extending his inquiry from the first century to late in the eighteenth century, Demaitre draws on translations of academic treatises and archival records to illuminate the professional standing, knowledge, and conduct of the practitioners who struggled to move popular perceptions of leprosy beyond loathing and pity. He finds that, while not immune to social and cultural perceptions of the leprous as degenerate, and while influenced by their own fears of contagion, premodern physicians moderated society's reactions to leprosy and were dedicated to the well-being of their patients.
The unknown story of the only leprosy colony in the continental United States, and the thousands of Americans who were exiled—hidden away with their “shameful” disease. 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.
Histopathological Diagnosis of Leprosy, is a comprehensive guide to the medical pathology of Hansen’s disease, which is a complex and clinically challenging infection caused by Mycobacterium leprae. Readers will find 8 chapters on key topics on the subject including general aspects of leprosy, different forms of leprosy (polar, borderline, etc.), reaction types and complications. The information presented in the handbook will equip the reader with the knowledge required to identify the disease in patients and perform differential diagnosis where required. Key Features: - 8 chapters dedicated to key topics about leprosy and its diagnosis - More than 2014 figures featuring over 1000 clinical and histopathological photographs - Complete information about differential diagnosis and reaction phenomena - includes a section dedicated to special and complicated cases - References for further reading - Brings the expertise of renowned physicians to the reader The detailed presentation of the book is of great value to both healthcare professionals (pathologists, dermatologists, physicians) who are involved in the care of leprosy patients, and medical residents who are seeking information about the disease as part of their medical training.
In 1924 when thirty-two-year-old Edmond Landry kissed his family good-bye and left for the leprosarium in Carville, Louisiana, leprosy, now referred to as Hansen's Disease, stigmatized and disfigured but did not kill. Those with leprosy were incarcerated in the federal hospital and isolated from family and community. Phones were unavailable, transportation was precarious, and fear was rampant. Edmond entered the hospital (as did his four other siblings), but he did not surrender to his fate. He fought with his pen and his limited energy to stay connected to his family and to improve living conditions for himself and other patients. Claire Manes, Edmond's granddaughter, lived much of her life gripped by the silence surrounding her grandfather. When his letters were discovered, she became inspired to tell his story through her scholarship and his writing. Out of the Shadow of Leprosy: The Carville Letters and Stories of the Landry Family presents her grandfather's letters and her own studies of narrative and Carville during much of the twentieth century. The book becomes a testament to Edmond's determination to maintain autonomy and dignity in the land of the living dead. Letters and stories of the other four siblings further enhance the picture of life in Carville from 1919 to 1977.
Leprosy is a neglected topic in the burgeoning field of the history of medicine and the colonized body. Leprosy in Colonial South India is not only a history of an intriguing and dramatic endemic disease, it is a history of colonial power in nineteenth-century British India as seen through the lens of British medical and legal encounters with leprosy and its sufferers in south India. Leprosy in Colonial South India offers a detailed examination of the contribution of leprosy treatment and legislative measures to negotiated relationships between indigenous and British medicine and the colonial impact on indigenous class formation, while asserting the agency of the poor and vagrant leprous classes in their own history.
By comparing institutions in Hawai'i and Louisiana designed to incarcerate individuals with a highly stigmatized disease, Colonizing Leprosy provides an innovative study of the complex relationship between U.S. imperialism and public health policy in the late nineteenth and early twentieth centuries. Focusing on the Kalaupapa Settlement in Moloka'i and the U.S. National Leprosarium in Carville, Michelle Moran shows not only how public health policy emerged as a tool of empire in America's colonies, but also how imperial ideologies and racial attitudes shaped practices at home. Although medical personnel at both sites considered leprosy a colonial disease requiring strict isolation, Moran demonstrates that they adapted regulations developed at one site for use at the other by changing rules to conform to ideas of how "natives" and "Americans" should be treated. By analyzing administrators' decisions, physicians' treatments, and patients' protests, Moran examines the roles that gender, race, ethnicity, and sexuality played in shaping both public opinion and health policy. Colonizing Leprosy makes an important contribution to an understanding of how imperial imperatives, public health practices, and patient activism informed debates over the constitution and health of American bodies.
In this groundbreaking work, Susan L. Burns examines the history of leprosy in Japan from medieval times until the present. At the center of Kingdom of the Sick is the rise of Japan’s system of national leprosy sanitaria, which today continue to house more than 1,500 former patients, many of whom have spent five or more decades within them. Burns argues that long before the modern Japanese government began to define a policy toward leprosy, the disease was already profoundly marked by ethical and political concerns and associated with sin, pollution, heredity, and outcast status. Beginning in the 1870s, new anxieties about race and civilization that emanated from a variety of civic actors, including journalists, doctors, patent medicine producers, and Christian missionaries transformed leprosy into a national issue. After 1900, a clamor of voices called for the quarantine of all sufferers of the disease, and in the decades that followed bureaucrats, politicians, physicians, journalists, local communities, and leprosy sufferers themselves grappled with the place of the biologically vulnerable within the body politic. At stake in this “citizenship project” were still evolving conceptions of individual rights, government responsibility for social welfare, and the delicate balance between care and control. Refusing to treat leprosy patients as simply victims of state power, Burns recovers their voices in the debates that surrounded the most controversial aspects of sanitarium policy, including the use of sterilization, segregation, and the continuation of confinement long after leprosy had become a curable disease. Richly documented with both visual and textual sources and interweaving medical, political, social, and cultural history, Kingdom of the Sick tells an important story for readers interested in Japan, the history of medicine and public health, social welfare, gender and sexuality, and human rights.