Although leprosy, or Hansen's Disease, was never an epidemic in The United States, cases of leprosy have been reported in Louisiana as early as the 18th century. The first leprosarium in the continental United States existed in Carville, Louisiana from 1894-1999 and Baton Rouge, Louisiana is the home of the only institution in the United States that is exclusively devoted to leprosy consulting, research, and training.
From 1894-1999, the leprosarium underwent several name changes: Louisiana Leper Home (1894), U.S. Marine Hospital No. 66 (1921), Gillis W. Long Hansen's (Leprosy) Disease Center (1986). Due to the various names, the leprosarium was commonly referred to as "Carville." Carville became known as the national leprosarium because all persons diagnosed with leprosy (Hansen's disease) in the U.S. were required, by law, to be quarantined and treated. [15] The leprosarium soon became a center for leprosy research.
Due to the social stigmas that surrounded leprosy in Louisiana, upon arriving at Carville, patients were encouraged to take on a new identity. As a result, many patients at Carville changed their names. Additionally, some patients had very limited contact with family members. Visitors were allowed, but the remote location made this difficult. Even the staff of the leprosarium seldom knew the patients' real names or knew what town they came from. [16]
When a resident of Carville died, he or she could be buried in the leprosarium's cemetery, if the family couldn't afford to bring the body home or the patient preferred to be buried at the hospital. Each patient received a tombstone that contained his or her name—either their real name or pseudonym—and case number. [21]
Many physicians in Louisiana have devoted their lives to researching leprosy. Additionally, numerous patients of Carville have worked to bring attention to the disease.
Leprosy, also known as Hansen's disease (HD), is a long-term infection by the bacteria Mycobacterium leprae or Mycobacterium lepromatosis. Infection can lead to damage of the nerves, respiratory tract, skin, and eyes. This nerve damage may result in a lack of ability to feel pain, which can lead to the loss of parts of a person's extremities from repeated injuries or infection through unnoticed wounds. An infected person may also experience muscle weakness and poor eyesight. Leprosy symptoms may begin within one year, but, for some people, symptoms may take 20 years or more to occur.
A leper colony, also known by many other names, is an isolated community for the quarantining and treatment of lepers, people suffering from leprosy. M. leprae, the bacterium responsible for leprosy, is believed to have spread from East Africa through the Middle East, Europe, and Asia by the 5th century before reaching the rest of the world more recently. Historically, leprosy was believed to be extremely contagious and divinely ordained, leading to enormous stigma against its sufferers. Other severe skin diseases were frequently conflated with leprosy and all such sufferers were kept away from the general public, although some religious orders provided medical care and treatment. Recent research has shown M. leprae has maintained a similarly virulent genome over at least the last thousand years, leaving it unclear which precise factors led to leprosy's near elimination in Europe by 1700. A growing number of cases following the first wave of European colonization, however, led to increased attention towards leprosy during the New Imperialism of the late 19th century. Following G.A. Hansen's discovery of the role of M. leprae in the disease, the First International Leprosy Conference held in Berlin in 1897 renewed interest and investment in the isolation of lepers throughout the European colonial empires. Although Western countries now generally treat cases of leprosy individually on an outpatient basis, traditional isolated colonies continue to exist in India, China, and some other countries.
The Bureau of Primary Health Care (BPHC) is a part of the Health Resources and Services Administration (HRSA), of the United States Department of Health and Human Services. HRSA helps fund, staff and support a national network of health clinics for people who otherwise would have little or no access to care. BPHC funds health centers in underserved communities, providing access to high quality, family oriented, comprehensive primary and preventive health care for people who are low-income, uninsured or face other obstacles to getting health care.
Paul Wilson Brand, was a pioneer in developing tendon transfer techniques for use in the hands of those with leprosy. He was the first physician to appreciate that leprosy is not a disease of the tissue but of the nerves: it is the loss of the sensation of pain which makes sufferers susceptible to injury and leads to tissue rotting away, especially in the extremities. Brand contributed extensively to the fields of hand surgery and hand therapy through his publications and lectures, and wrote popular autobiographical books about his childhood, his parents' missionary work, and his philosophy about the valuable properties of pain. One of his best-known books, co-written with Philip Yancey, is Pain: The Gift Nobody Wants (1993), republished in 1997 as The Gift of Pain.
Carville is a neighborhood of St. Gabriel in Iberville Parish in South Louisiana, located sixteen miles south of the capital city of Baton Rouge on the Mississippi River. Carville was the childhood hometown of political consultant James Carville, and was named for his grandfather, Louis Arthur Carville, the postmaster. The ZIP Code for Carville is 70721.
Leprosy stigma is a type of social stigma, a strong negative feeling towards a person with leprosy relating to their moral status in society. It is also referred to as leprosy-related stigma, leprostigma, and stigma of leprosy. Since ancient times, leprosy instilled the practice of fear and avoidance in many societies because of the associated physical disfigurement and lack of understanding behind its cause. Because of the historical trauma the word "leprosy" invokes, the disease is now referred to as Hansen's disease, named after Gerhard Armauer Hansen who discovered Mycobacterium leprae, the bacterial agent that causes Hansen's disease. Those who have suffered from Hansen's disease describe the impact of social stigma as far worse than the physical manifestations despite it being only mildly contagious and pharmacologically curable. This sentiment is echoed by Weis and Ramakrishna, who noted that "the impact of the meaning of the disease may be a greater source of suffering than symptoms of the disease".
As of 2009, 2,600 former leprosy patients were living in 13 national sanatoriums and 2 private hospitals in Japan. Their mean age is 80. There were no newly diagnosed Japanese leprosy patients in 2005, but one in 2006, and one in 2007.
Guy Henry Faget (1891–1947) was an American medical doctor who revolutionalized the treatment of leprosy, by demonstrating the efficacy of promin, as described in a paper published in 1943. Promin is a sulfone compound, synthesized by Feldman and his co-workers in 1940, which is a chemotherapeutic agent that was determined to be effective against tuberculosis in experimental animals. He was the grandson of Jean Charles Faget, and father of Maxime Faget.
Behkadeh Raji is the first leper colony to be built as an economically self-sufficient, independent village. It was built in 1961 on the initiative of Farah Pahlavi in Iran. The aim of the village concept was to not only achieve optimal care of lepers by the coexistence of healthy and diseased, but also to cultivate dialog and the exchange of information with the public about leprosy sufferers.
Leper colony money was special money which circulated only in leper colonies due to the fear that money could carry leprosy and infect other people. However, leprosy is not easily transmitted by casual contact or objects; actual transmission only happens through long-term, constant, intimate contact with leprosy sufferers and not through contact with everyday objects used by sufferers.
Worldwide, two to three million people are estimated to be permanently disabled because of leprosy. India has the greatest number of cases, with Brazil second and Indonesia third.
Promin, or sodium glucosulfone is a sulfone drug that was investigated for the treatment of malaria, tuberculosis and leprosy. It is broken down in the body to dapsone, which is the therapeutic form.
The Culion Leper Colony is a former leprosarium located on Culion, an island in the Palawan province of the Philippines. It was established by the U.S. government in order to rid leprosy from the Philippine Islands through the only method known at the time: isolating all existing cases and gradually phasing out the disease from the population. In addition to segregating the disease from the rest of the population, the island was later established in order to offer a better opportunity for people afflicted with leprosy to receive adequate care and modern treatments.
MORHAN or Movement of Reintegration of Persons Afflicted by Hansen's disease in English, is a non-profit organization that operates to reduce leprosy and the stigma of leprosy in Brazil. This organization was initially created to ensure the rights of patients from leper colonies due to their isolation, and today it is one of the most successful Brazilian social movements, with representation in the National Health Council. The group has used several methods to disseminate information about leprosy including, but not limited to, handing out pamphlets, hosting seminars, and organizing puppet shows for children. Morhan also creates its own publications as a means of mobilization and news regarding leprosy. Furthermore, Morhan has worked with anthropologists to provide explanatory models and lay explanations of leprosy within the Brazilian context. Morhan's work has been exemplary in creating partnerships between social groups and the government and received an award from the United Nation’s Millennium Development Goals. The current National Coordinator is Artur Custodio Moreira de Souza.
The history of leprosy was traced to its origins by an international team of 22 geneticists using comparative genomics of the worldwide distribution of Mycobacterium leprae. Monot et al. (2005) determined that leprosy originated in East Africa or the Near East and traveled with humans along their migration routes, including those of trade in goods and slaves. The four strains of M. leprae are based in specific geographic regions where each predominantly occurs:
The Carville Historic District in Carville, Louisiana, is a 60-acre (24 ha) historic district that was listed on the National Register of Historic Places on November 18, 1992. It formerly served as a treatment facility for leprosy, and was called the National Leprosarium, Gillis W. Long Hansen's Disease Center and Public Health Service Hospital No. 66.
Herbert Windsor Wade was an American medical doctor notable for his work on leprosy. He served as Medical Director of the Culion leper colony from 1922 to 1959.
Josefina Guerrero was a Filipina spy during World War II. Guerrero had leprosy and was an unsuspicious and effective surveillance asset for American allied forces.
Ernest Muir FRCS, CIE, CMG was a Scottish medical missionary and educator in British-controlled India and Nigeria most noted for his work with Hansen's disease (leprosy).
Regina Purtell (1866–1950) was an American nurse and nun. She was a Roman Catholic sister and a United States Army nurse who cared for Theodore Roosevelt's "Rough Riders" in the Spanish–American War. The media dubbed her "The Florence Nightingale of the Spanish-American War."
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