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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.
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.
Paper Edition. A compelling account of leprosy in colonial and post-colonial Mali.
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.
Angela Ki Che Leung's meticulous study begins with the classical annals of the imperial era, which contain the first descriptions of a feared and stigmatized disorder modern researchers now identify as leprosy. She then tracks the relationship between the disease and China's social and political spheres (theories of contagion prompted community and statewide efforts at segregation); religious traditions (Buddhism and Daoism ascribed redemptive meaning to those suffering from the disease), and evolving medical discourse (Chinese doctors have contested the disease's etiology for centuries). Leprosy even pops up in Chinese folklore, attributing the spread of the contagion to contact with immoral women. Leung next places the history of leprosy into a global context of colonialism, racial politics, and "imperial danger." A perceived global pandemic in the late nineteenth century seemed to confirm Westerners' fears that Chinese immigration threatened public health. Therefore battling to contain, if not eliminate, the disease became a central mission of the modernizing, state-building projects of the late Qing empire, the nationalist government of the first half of the twentieth century, and the People's Republic of China. Stamping out the curse of leprosy was the first step toward achieving "hygienic modernity" and erasing the cultural and economic backwardness associated with the disease. Leung's final move connects China's experience with leprosy to a larger history of public health and biomedical regimes of power, exploring the cultural and political implications of China's Sino-Western approach to the disease.
A major reassessment, based on hitherto unpublished manuscript material, of a disease whose history has attracted more myths and misunderstandings than any other.
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.
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.