Leprosy and World Leprosy Day

Leprosy has affected humanity for thousands of years and the disease takes its name from the Greek word λέπρᾱ (léprā), from λεπῐ́ς (lepís; “scale”), while the term “Hansen’s disease” is named after the Norwegian physician Gerhard Armauer Hansen. Written accounts of leprosy date back thousands of years. The various skin diseases translated as leprosy appear in the ancient Indian text, the Atharava Veda, by 600 BC. Another Indian text, the Manusmriti (200 BC), prohibited contact with those infected with the disease and made marriage to a person infected with leprosy punishable. Interpretations of the presence of leprosy have been made on the basis of descriptions in ancient Indian (Atharvaveda and Kausika Sutra), Greek, and Middle Eastern (Tzaraath) documentary sources that describe skin afflictions. Leprosy probably did not exist in Greece or the Middle East before Common Era. Leprosy is one of the diseases mentioned in the Holy Quran in the context of the miracles of the noble prophet Jesus, son of Mary. It did not exist in the Americas before colonization by modern Europeans. It did not exist in Polynesia until the middle of the 19th century. Skeletal remains from the second millennium BCE, discovered in 2009, represent the oldest documented evidence for leprosy. Located at Balathal, in Rajasthan, northwest India, the discoverers suggest that if the disease did migrate from Africa to India, during the third millennium BCE “at a time when there was substantial interaction among the Indus Civilization, Mesopotamia, and Egypt, there needs to be additional skeletal and molecular evidence of leprosy in India and Africa so as to confirm the African origin of the disease.” A proven human case was verified by DNA taken from the shrouded remains of a man discovered in a tomb next to the Old City of Jerusalem dated by radiocarbon methods to 1–50 AD. In Kashmir leprosy was once thought to be the most horrifying and deadly disease and those afflicted were treated as outcasts and lived in isolated colonies. It is now totally curable by multi-drug therapy and is not contagious as was thought earlier. The British set up the colony on the banks of Nageen Lake in a place which was known as Baharhaar. A Hospital for leprosy patients was housed in a Victorian style building. In the vicinity of the hospital a colony of single storey mud huts housed the lepers and their families. Over a period of time, the colony as well as the hospital deteriorated. No one bothered about these outcasts from the society who has coming from places as far off as Kargil and Gurez. A couple of years back, on visiting the colony in winter alongwith friends , the poor men and women, with children, were living in unhappy conditions. Few years back the government had initiated construction of quarters for the inhabitants of the colony. However, these were left incomplete due to some dispute with the contractor. The local newspapers carried some stories about the plight of the patients.
Leprosy has historically been associated with social stigma, which continues to be a barrier to self-reporting and early treatment. Separating people affected by leprosy by placing them in leper colonies still occurs in some areas of India, China, Africa, and Thailand. Most colonies have closed, as leprosy is not very contagious. Some consider the word “leper” offensive, preferring the phrase “person affected with leprosy”. Leprosy is classified as a neglected tropical disease. Leprosy, also known as Hansen’s disease (HD) is the bacterial disease that causes severe, disfiguring, skin sores and nerve damage in the arms, legs and skin of body. It is caused by slow growing bacteria Mycobacterium lepromatosis or Mycobacterium leprae. The common symptoms present in the different types of leprosy include a runny nose; dry scalp; eye problems; skin lesions; muscle weakness; reddish skin; smooth, shiny, diffuse thickening of facial skin, ear, and hand; loss of sensation in fingers and toes; thickening of peripheral nerves; a flat nose due to destruction of nasal cartilage; and changes in phonation and other aspects of speech production. In addition, atrophy of the testes and impotence may occur. Leprosy can affect people in different ways. The average incubation period is 5 years. People may begin to notice symptoms within the first year or up to 20 years after infection. The first noticeable sign of leprosy is often the development of pale or pink coloured patches of skin that may be insensitive to temperature or pain. Patches of discolored skin are sometimes accompanied or preceded by nerve problems including numbness or tenderness in the hands or feet. Secondary infections (additional bacterial or viral infections) can result in tissue loss, causing fingers and toes to become shortened and deformed, as cartilage is absorbed into the body. A person’s immune response differs depending on the form of leprosy. Approximately 30% of people affected with leprosy experience nerve damage. The nerve damage sustained is reversible when treated early, but becomes permanent when appropriate treatment is delayed by several months. Damage to nerves may cause loss of muscle function, leading to paralysis. It may also lead to sensation abnormalities or numbness, which may lead to additional infections, ulcerations, and joint deformities. 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 due to 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. Leprosy is spread between people, although extensive contact is necessary and about 95% of people who contract M. leprae do not develop the disease. The greatest risk factor for developing leprosy is contact with another person infected by leprosy. People who are exposed to a person who has leprosy are 5–8 times more likely to develop leprosy than members of the general population. Leprosy also occurs more commonly among those living in poverty. Not all people who are infected or exposed to M. leprae develop leprosy, and genetic factors are suspected to play a role in susceptibility to an infection. Conditions that reduce immune function, such as malnutrition, other illnesses, or genetic mutations, may increase the risk of developing leprosy. Infection with HIV does not appear to increase the risk of developing leprosy. Certain genetic factors in the person exposed have been associated with developing lepromatous or tuberculoid leprosy. Cases of leprosy often cluster in families and several genetic variants have been identified. In many people who are exposed, the immune system is able to eliminate the leprosy bacteria during the early infection stage before severe symptoms develop. A genetic defect in cell-mediated immunity may cause a person to be susceptible to develop leprosy symptoms after exposure to the bacteria. The region of DNA responsible for this variability is also involved in Parkinson’s disease, giving rise to current speculation that the two disorders may be linked at the biochemical level. Leprosy spread is thought to occur through a cough or contact with fluid from the nose of a person infected by leprosy and genetic factors and immune function play a role in how easily a person catches the disease. It has been found that leprosy does not spread during pregnancy to the unborn child, or through sexual contact but occurs more commonly among people living in poverty. The majority (95%) of people who are exposed to M. Leprae do not develop leprosy; casual contact such as shaking hands and sitting next to someone with leprosy does not lead to transmission. People are considered non-infectious 72 hours after starting appropriate multi-drug therapy. Two exit routes of M. leprae from the human body often described are the skin and the nasal mucosa, although their relative importance is not clear. Lepromatous cases show large numbers of organisms deep in the dermis, but whether they reach the skin surface in sufficient numbers is doubtful. Leprosy may also be transmitted to humans by armadillos, although the mechanism is not fully understood. There are two main types of the disease – paucibacillary and multibacillary, which differ in the number of bacteria present. A person with paucibacillary disease has five or fewer poorly pigmented numb skin patches while a person with multibacillary disease has more than five skin patches. The diagnosis is confirmed by finding acid-fast bacilli in a biopsy of the skin. Leprosy is curable with multidrug therapy. Treatment of paucibacillary leprosy is with the medications dapsone, rifampicin, and clofazimine for six months. Treatment for multibacillary leprosy uses the same medications for 12 months. A number of other antibiotics may also be used. These treatments are provided free of charge by the World Health Organization. People with leprosy can live with their families and go to school and work. Early detection of the disease leprosy is important, since physical and neurological damage may be irreversible even if cured. Medications can decrease the risk of those living with people who have leprosy from acquiring the disease and likely those with whom people with leprosy come into contact outside the home. The WHO recommends that preventive medicine be given to people who are in close contact with someone who has leprosy. The suggested preventive treatment is a single dose of rifampicin (SDR) in adults and children over 2 years old who do not already have leprosy or tuberculosis. Preventive treatment is associated with a 57% reduction in infections within 2 years and a 30% reduction in infections within 6 years. A number of leprostatic agents are available for treatment. For people with nerve damage, protective footwear may help prevent ulcers and secondary infection. Canvas shoes may be better than PVC-boots. There may be no difference between double rocker shoes and below-knee plaster. World Leprosy Day takes place on the last Sunday of January* worldwide. On World Leprosy Day we raise public awareness of leprosy, including the medical and social implications of the disease and the rights of persons affected. Social media campaigns, community parades, school programming, and cultural events are held around the world in the weeks leading up to World Leprosy Day. Over the past year, the headlines have been dominated by COVID-19. It is easy to overlook other diseases, especially a disease such as leprosy that many people think is a disease of the past. But leprosy requires our attention. There are still some 200,000 new cases diagnosed worldwide each year. Millions of people are living with some form of disability as a result of leprosy. Both the label “leprosy” and the disability that can result if this age-old disease goes untreated can lead to social exclusion. Persons affected by leprosy continue to face discrimination, reinforced in some countries by outdated laws that make leprosy grounds for divorce, prevent people with the disease from participating in public life or place other restrictions on their activities. Women and children are particularly vulnerable to the social and economic consequences of the disease. Overcoming leprosy involves more than early diagnosis and prompt treatment. It also requires changing mindsets so that leprosy is no longer a source of shame or prejudice. We must remove all barriers in the way of those seeking medical care. We must eliminate the obstacles that prevent affected individuals and their families from living in dignity and enjoying all their basic human rights as full members of society. This year, we unite around one goal, which is to Beat Leprosy. This World Leprosy Day, we invite the international community to help spread the word that Leprosy Is Curable, join in the fight to End Stigma, and advocate for the Mental Wellbeing of persons who have experienced leprosy and other neglected tropical diseases. We believe one day we will achieve a world without leprosy.
(Bilkees Nazir is a Research Scholar at Kashmir University Srinagar, Dr. Bilal A. Bhat is an Associate Professor at S K University Of Agriculture Sciences & Technology- SKUAST-K Srinagar. Views are their own)

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