Leprosy, or Hansen's Disease is neither hereditary or flesh eating - but in many countries of the world it is feared and patients stigmatised - So what is it - and why the myths?

Leprosy is an infectious disease caused by the bacteria Mycobacterium leprae. Most people have a natural immunity to the disease, and those that do develop leprosy can be cured with modern Multi Drug Therapy treatment (MDT).

The leprosy germ affects nerves, which lie near the skin, and when untreated, this can lead to a loss of sensation in the affected parts of the body. Because the person affected with the germ cannot feel, wounds or other injuries go unnoticed or untreated. Life-long care of anaesthetic limbs is one of the greatest challenges faced by people affected by leprosy and neglect can cause damage so severe as to cause paralysis, such as clawed fingers or lagophthalmos (an inability to blink, resulting in corneal ulcers, and, if untreated, blindness).

By working through its own programmes or in partnership with government or non-governmental organisations and in partnership with people affected by leprosy, TLM provides medical and surgical services to those needing treatment. In addition TLM offers comprehensive rehabilitation programmes with vocational training, housing assistance, education and work creation schemes to help former patients gain social acceptance and a new sense of dignity and purpose. Leprosy is a disease of poverty and it tends to spread in areas of malnutrition and overcrowding. Leprosy is most prevalent in India, Brazil, Bangladesh, Myanmar and Indonesia.

Treatment involves using three drugs: Dapsone, Rifampicin, and Clofazimine, which are very effective in getting rid of the germs. This treatment is called Multi Drug Therapy (MDT). Mild, non-infectious cases of leprosy need to take treatment with two drugs for 6 months. More severe infectious cases take three drugs for one year. The leprosy germ likes the cool places in the body particularly the skin and the surface nerves.

This makes it a very visible disease, starting with patches on the skin. It may also damage nerves in the face, arms and legs and lead to crooked hands, a nodulous, swollen face, or sores on their hands and feet. It is the visible disability or deformity that leads to much of the fear and stigma from which affected people suffer. This leads to feelings of fear and shame, which may mean that these sufferers neglect to come for treatment at the start of the disease, and only come when they already have nerve damage. The Leprosy Mission aims to help break this vicious circle by implementing health education programmes and disability prevention and self-care training for patients.

Damaged nerves may result in paralysis and in loss of sensation. MDT cannot reverse nerve damage. Loss of sensation in hands, feet and eyes means that everyday activities are fraught with danger - burns go unrecognised, wounds untended, stones in shoes, and grit in the eyes are both undetected and untreated. The end result can be loss of sight, fingers and feet.

Is climate a factor?

It is true that cases of leprosy are today found in the warmer countries of the world. Yet climate cannot be a critical factor, as the disease was once particularly prevent in the cold Scandinavian countries.

What about poverty?

Poverty has as much to do with the incidence of leprosy as it does with most other public health problems. Poor people seldom have access to healthy food, adequate sanitation and basic medical care. They also live in crowded conditions. As a result, the disease is far more common among poor people. Eliminating poverty would probably help to eliminate leprosy as well.

Is it hereditary?

Leprosy tends to occur within families, and in the past this led many people to think that it was hereditary. Today, however, scientists think that these concentrations in families are due to the increased opportunity for intimate contact. However, only a small proportion of family members contract the disease.

Impairments, deformities and disabilities

Although leprosy is seldom fatal, it can cause a whole range of impairments, deformities and physical disabilities: contracted fingers and toes, 'drop-foot' and 'drop-wrist', thickening skin (especially on the face and earlobes), nasal deformity, facial paralysis, loss of eyebrows, and blindness. Some of these problems are caused directly by the disease; others are its secondary results.

The cause

Leprosy is one of the earliest diseases to have been recorded: some of its clinical signs have been identified from descriptions given in the ancient literatures of Egypt, India and Israel. But it was not until 1873 that the Norwegian physician Dr. G.H. Armauer Hansen discovered Mycobacterium leprae-the first bacteria to be identified as causing a major disease in man. Before (and since) this discovery, many other theories were current about the cause of leprosy - that it was a curse from God or a punishment for one's own sins or the sins of others; that it was related to the law of Karma or Witchcraft; and that it was due to eating certain foods, hereditary disposition or even sudden changes of temperature.

The cure

Historical theories about how to cure leprosy were equally unscientific. For example, those who regarded the disease as a sign of moral impurity felt the best remedy to be some kinLeprosy rarely causes death, but if left untreated the disease can advance over the years - a phenomenon that can inspire fear in the beholderd of purification ritual, such as bathing in a holy river or touching the relics of saints.

Why does leprosy lead to stigma?

Visibility

Untreated leprosy is often very visible: it can cause prominent skin patches and nodules, and in its advanced form, severe deformation of the face, hands and feet. A person suffering from the disease is easily stigmatised, perhaps because their appearance differs others. Disabilities imply incapacity and disabled people are often viewed as a burden to themselves, their families and society.

Its progressive nature

Leprosy rarely causes death, but if left untreated the disease can advanced over the years-a phenomenon that can inspire fear in the beholder.

Its mystery

Throughout the centuries leprosy has been the subject of innumerable legends. Until quite recently we understood very little about the disease: its causes, how it was transmitted, how it could be cured. This very mysteriousness often provoked exaggerated feelings of insecurity in the public and therefore an unwarranted fear of people affected by the disease.

Religious associations

In the past, most cultures explained away leprosy in religious terms, Man, nature and the spiritual world often viewed as interdependent, hence a physical disease in an individual could be seen as contaminating a whole community. Leprosy could signify the worst that can happen to a human being. Pain, deformity, poverty and rejection by one's fellows. Yet, paradoxically, it could also symbolize nobility: the ability of those affected by disease to endure suffering and prejudice, and the capacity of others to overcome their natural fears and identity with, and care for, people who are rejected.

Links with poverty

Although no special class is immune from leprosy, the disease today mainly affects the poor developing countries and the poorer classes within those countries. This association with impoverished and powerless people helps to explain the negative attitudes of the public and service providers towards leprosy and its neglect by health and social planners. People affected by leprosy are seldom consulted by policy makers, whereas those with other diseases and disabilities increasingly are.

Segregation

Segregation, that throughout the centuries has usually been the fate of the people affected by leprosy, has created a strong association in the mind of the public between the disease and ostracism. The longer such segregation persists, the harder this mental association will be to fight.

Reducing the stigma

The only way to stop the stigmatization of people affected by leprosy is to do away with the situations that caused the stigma in the first place. How successful have we been at doing this?

Although Multi-Drug Therapy has drastically reduced the number of people affected by disease, we have had far less success in raising public awareness, educating clients or encouraging co-operation between people affected by the disease, care providers and the public.If stigma is to be reduced, the public, the service providers and the clients must learn the new realities about leprosy: the cure is permanent, people undergoing treatment are not contagious, clients can prevent disabilities if they accept their own responsibility for doing so, and once a person has been diagnosed they should continue to live as normally as possible. Only then will attitudes and behavior change.

From the early 1940s sulphone drugs as promin, diasone and dapsone began to be used with considerable success to treat people affected by leprosy. But major problems remained. In some cases, clients had to continue the treatment for the rest of their lives; in others, the leprosy bacillus became resistant to sulphone drugs.The search for more effective drugs was hindered by the fact that Mycobacterium leprae could not as yet successfully be cultivated in the laboratory; testing always had to be done on human volunteers. In the 1960s, however, it was discovered that the bacillus could be grown in mice and the nine-banded armadillo, and this enabled new drugs such as clofazamine and rifampicin to be tested.

Trials showed that a combination of these new drugs and the older sulphone drugs could cure leprosy relatively quickly. In 1981, the World Health Organisation (WHO) therefore recommended the use of dapsone, rifampicin and clofazamine for two years to treat people with many bacilli in their bodies, and a combination of rifampicin and dapsone over six months to treat those with few bacilli. The two-year regime has been reduced to twelve months. This Multi-Drug Therapy (MDT) was used all over the world with such remarkable results that WHO was able to make one of its major objectives, the elimination of leprosy, a public health problem by the year 2000 and in many places this was achieved.

The search continues for ever faster-acting and more convenient drugs.

How contagious is leprosy?

Because the bacillus Mycobacterium leprae can be transmitted to other people, leprosy is contagious. But it is not very contagious, for several reasons:

Only people with large numbers of bacilli in their bodies can pass the disease on to others. These 'multibacillary' cases account for only around 40 percent of the total. The remaining 60 percent - the 'paucibacillary' cases are not considered contagious. Only a small proportion of those exposed to multibacillary cases of leprosy ever catch the disease; an estimated 95 percent of people have a natural resistance. This is shown by the fact that very few of the people who work with leprosy contract it.

Multi-drug therapy kills most of the bacilli in a matter of days. This means that people undergoing treatment for the disease are not contagious. How mycobacterium leprae is passed from one person to another is still not entirely clear. However, since there is evidence that the bacillus can survive for some time outside the host, it is now thought that leprosy is spread through the respiratory tract, Multibacillary cases will have many bacilli in the mucous lining of the tract, and these can be expelled by coughing and sneezing.

Where did the disease come from?

As we have seen, leprosy was known in Egypt and Middle East in ancient times, and the disease may have originated there. How it spread to Europe is not known; Alexander the Great's soldiers could have brought it back, or perhaps the crusaders. Leprosy became endemic in medieval Europe and thousands of lazarettos were built to house people affected by the disease.

Then suddenly, after about 1200 AD, leprosy went into sharp decline in most of Europe. This may have been due to improved economic conditions or to immunological relationships with other diseases (such as bubonic plague or tuberculosis), or because the forced isolation reduced the reservoir of infection. We do not know for sure. As for the Americans, the evidence suggests that Europeans took the disease there. Whatever its provenance, leprosy is today found mostly in Asia, Africa and South Africa, Europe now has very few cases, and most of the new cases in North American are among immigrants.