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.
Lepra (Leprosy Relief Association) is a UK-based international charity established in 1924, working to diagnose, treat, and rehabilitate people with leprosy. Lepra currently works in India, Bangladesh, and Zimbabwe.
Leprosy was said to be first recognized in the ancient civilizations of China, Egypt, and India, according to the World Health Organization (WHO). Leprosy, also known as Hansen's disease, was officially eliminated at the national level in China by 1982, meaning prevalence is lower than 1 in 100,000. There are 3,510 active cases today. Though leprosy has been brought under control in general, the situation in some areas is worsening, according to China's Ministry of Health. In the past, leprosy sufferers were ostracized by their communities as the disease was incurable, disfiguring, and wrongly thought to be highly infectious.
Yōhei Sasakawa is chairman of The Nippon Foundation, the World Health Organization Goodwill Ambassador for Leprosy Elimination, and Japan's Ambassador for the Human Rights of People Affected by Leprosy. His global fight against leprosy and its accompanying stigma and social discrimination is an issue to which he has remained highly committed for more than 40 years. As chairman of The Nippon Foundation, Japan's largest charitable foundation, he guides public-interest activities in modern Japan. Sasakawa received his degree from Meiji University’s School of Political Science and Economics. Sasakawa's father was businessman, politician, and philanthropist Ryōichi Sasakawa.
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".
Wellesley C. Bailey (1846-1937) was the founder of the international charity The Leprosy Mission. In India, in the 1860s, he witnessed the severe consequences of the disease and vowed to make caring for those struggling with leprosy his life's work. The Mission is still active today.
Leprosy currently affects approximately a quarter of a million people throughout the world, with the majority of these cases being reported from India.
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.
Sightsavers is an international non-governmental organisation that works with partners in developing countries to treat and prevent avoidable blindness, and promote equality for people with visual impairments and other disabilities. It is based in Haywards Heath in the United Kingdom, with branches in Sweden, Norway, India, Italy, Republic of Ireland, the United Arab Emirates, and the US.
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.
EMMS International is a Non-governmental Organization (NGO) that provides medical aid to countries around the world and operates offices in the UK. Founded to provide clinical education and medical aid to people in need in Scotland, it later expanded to the Middle East, South Asia, and Africa through sponsoring the construction of dispensaries and hospitals. Its education expanded from training physicians in Edinburgh to training local nurses and physicians in the countries where it works. EMMS continues to provide resource assistance at all its sites. Based in Scotland, its vision is health for today, hope for tomorrow.
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:
P. K. Gopal is an Indian social worker and a co-founder of International Association for Integration, Dignity and Economic Advancement (IDEA), an international advocacy group, known for his services towards eradication of leprosy, especially in India. He was honored by the Government of India, in 2012, with the fourth highest Indian civilian award of Padma Shri.
The Catholic Medical Mission Board (CMMB) is an international, faith-based NGO, providing long-term, co-operative medical and development aid to communities affected by poverty and healthcare issues. It was established in 1912 and officially registered in 1928. CMMB is headquartered in New York City, USA, and currently has country offices in Haiti, Kenya, Peru, South Sudan, and Zambia.
Dr Ernest Woodward Price MD, FRCSE, DTM&H, OBE was a missionary doctor, orthopaedic surgeon, leprosy specialist and the discoverer of podoconiosis, one of the neglected tropical diseases. A list of his publications is available online.
Nora Neve (1873-1952) was a British nurse and medical missionary with the Church Missionary Society who pioneered missionary nursing. Her work was instrumental in the development of the Kashmir Mission Hospital in Srinagar. She was the hospital's first Superintendent of Nursing and led education and cleanliness initiatives. Neve also recorded and published records of Kashmiri hospital practices in the American Journal of Nursing, contributing to the tool kits of other missionaries and preserving a part of Kashmir's cultural history.
Norman Cook was a British physician, medical missionary, and evangelist in Northern Nigeria from 1930 to 1933. As a member of the Hausa Band from Cambridge University, Cook was influential in the development of the hospitals and out-patient dispensaries in Zaria and Wusasa and was the leader in the building of the dispensary in Maska. His transfer of the leper colony in Zaria resulted the establishment of the National Tuberculosis and Leprosy Training Centre in Zaria, Nigeria in 1991. Cook’s missionary service was brief due to his unexpected death caused by septicaemia in the operating theater.
Anandaban Hospital aka Anandaban Leprosy Hospital is a non-government specialized tertiary leprosy care hospital located in Lele, Lalitpur in Bagmati Province of Nepal. It provides service to about 50,000 leprosy and general patients every year. In partnership with International Nepal Fellowship, it runs Green Pastures Hospital and Rehabilitation Center in Pokhara.
