Questions and Answers on Leprosy

1. What is leprosy?

Leprosy is a non-hereditary disease, wherein the virus attacks the skin and the nervous system. Doctor Gerhard Armauer Hansen from Norway discovered the leprosy bacterium (mycobacterium leprae) in 1872. The culture of this virus in culture medium has not been successful to date; therefore, there is also no vaccine against leprosy.

Leprosy (also known as Hansen's Disease) is an communicable disease involving the skin and nerves of infected individuals. Pale patches on the skin are usually the first sign of the disease - they are painless, do not itch and therefore are often ignored by the patient.

Left untreated, leprosy causes nerve damage and other complications as the disease progresses. The numbness and loss of sensation in the limbs often leads to festering wounds on the hands and feet, and then to the characteristic deformities of the face and limbs. In many communities this leads to stigma towards those affected and their families, causing them to be shunned and even excluded from everyday life.

Leprosy is caused by a bacterium, Mycobacterium Leprae, which is closely related to the organism causing tuberculosis. The mechanism of infection is not fully understood, but it is generally thought to be by droplet spread through the upper respiratory tract. The incubation period is long, usually between 2 and 8 years, but it can be up to 20 years in some cases.

Casual contact with a person affected by leprosy does not lead to infection. Evidence suggests that residence for several years in an endemic area is needed before the risk of infection becomes appreciable.

Poverty-induced living conditions contribute to the infection. For this reason, leprosy often occurs among undernourished people, who live in poor and crowded living conditions. Leprosy is a disease of poverty and must always be considered in the context of the general living conditions of the affected persons.

The current strategy to control leprosy involves early case finding and treatment, with the aim of stopping transmission of the disease to new contacts.

2. How is leprosy transmitted?

The path of transmission is not known precisely. Poverty-induced living conditions - particularly in the countries of the "Third World" - are conducive to the infection. For this reason, leprosy also often afflicts undernourished and malnutritioned people, who must live in poor and confined living conditions. Leprosy is a disease of poverty and must always be considered in the context of the general living conditions of the affected persons. In the Middle Ages, leprosy was a serious problem in Europe as well. With the improvement of general living conditions, however, this „disease of poverty“ disappeared. Incidentally: Out of 100 persons in the world, 95 have an innate defence against the leprosy virus.

3. How does the disease manifest itself?

In simple words, there are two main forms of leprosy: an uninfectious form and an infectious form. In the uninfectious form, the patients suffer primarily from skin damages and affliction of the nerves. Thus, crippling of the hand, the leg or certain nerves of the eyes can occur. The disintegration of the eye nerves can lead to blindness. In the infectious form of leprosy, the virus multiplies very fast. The leprosy patients are infectious for long before they even notice that they are afflicted by the disease. Once it breaks out, the disease leads to the formation of boils and lumps on the skin, and nerve damages occur. The ulcers and deformities, which one often sees in leprosy patients, are seldom caused directly by the disease, rather, they are caused by nerve disintegration and the loss of sensation caused by it. A leprosy patient, who, for instance, does not have any feeling in his hands, sustains injuries or burns on his hands easily. This easily leads to infections, which are not taken note of sufficiently by the patient due to the lack of the sensation of pain. The infection can progress unimpeded, if left untreated, which can even lead to loss of limbs.

4. What problems are associated wih this disease?

Purely from the medical point of view, the loss of sensation is especially problematic: A limited sense of touch as well as the lack of sensation in hands and feet lead easily to injuries and burns, which are either not noted or noted (too) late. Then, inflammations occur, which can often progress unimpeded and lead to the loss of limbs in the final stage. The affliction of the eyes can result in blindness. Particularly serious for the leprosy patients are the social problems, which are associated with the disease: even today, persons affected by leprosy are segregated from their former social environment. One reason for this is the deep-seated, irrational dread of a disease, which can deform a person so terribly. In the Middle Ages, leprosy was regarded even in our part of the world as «God‘s Punishment». A focus of the work is, therefore, also an intensive health declaration in the countries affected by leprosy, in order to dispel the existing fears associated with the disease through information.

5. How many persons suffer from leprosy even today?

WHO estimates 2.5 to 3 million leprosy patients. Every hour, 30 new leprosy patients are discovered worldwide. On an average, out of these 30 persons, two already suffer from severe disabilities, another four face loss of sensation. 5 out of these are children under fourteen years. The number of new infections lies currently around 260 000 persons per year and has remaines constant after a reduction in the years 2002-2004.

6. In which countries is leprosy prevalent?

Primarily in the poor countries of the Southern hemisphere, leprosy is still a big problem. India is the worst affected with over 50% of all leprosy patients, followed by Brazil that stands for app. 40'000 new cases every year. Over 90% of new cases worldwide are found in 16 countries with more then 1000 new cases pre year. In Asia this concerns apart from India Bangladesh, China, Indonesia, Myanmar (former Burma), Nepal, Philippines and Sri Lanka. In Africa these countries are Ethiopia, Democratic Republic of Congo, , Madagascar, Mozambique, Nigeria, Sudan and Tansania.

7. Is leprosy curable?

Yes, leprosy is curable with a drug treatment lasting 6 to 12 months. During this period, the leprosy virus is killed totally with the help of effective drugs. Since 1982, there are different combination therapies.

8. Can something be done against the sustained disabilities?

Through operation, physiotherapy, orthopaedic shoes, prostheses and other measures of medical rehabilitation, corrective help can be rendered. Permanent nerve damages, however, cannot be reversed. The number of persons, who remain disabled for life due to a leprosy affliction, is estimated at about 2 to 3 million worldwide.

9. Is there any risk of infection, e.g. among travellers?

For contracting leprosy, long-term, close contact with the infected person is necessary. The disease is caused by a bacteria related with the tuberculosis virus and plays practically no role in travel medicine. If there is an infection among travellers (e.g. development workers), it is, as a rule, easily curable through drug treatment, as far as there are no severe damages.

10. Does leprosy still exist?

Yes - NLEP - Progress Report for the year 2010-11 ending on 31st March 2011

11. Which countries is leprosy found in today?

Mainly in countries where there are high levels of poverty. See the map below for an overview of the number of new cases of leprosy detected around the world in 2010 (latest figures available).

12. How is leprosy passed on?

Scientists are not 100 per cent sure. It is not hereditary and cannot be caught by touch. Most scientists believe it is caught through droplets of moisture passing through the air from someone who has leprosy but has not yet started treatment. Symptoms can be slow to appear and it may be five or ten years before the disease appears after initial exposure.

13. What are the signs and symptoms of Leprosy?

Signs and Symptoms of Tuberculoid Leprosy Tuberculoid leprosy (also known as paucibacillary leprosy) is the mild form of the disease. Early signs and symptoms of tuberculoid leprosy can include one or more light or slightly red patches of skin that appear on the trunk or extremities. This may be associated with a decrease in light-touch sensation in the area of the rash. Other signs and symptoms can include:
Skin stiffness and dryness
Loss of fingers and toes
Eye problems, which leads to blindness
Severe pain
Muscle weakness, especially in the hands and feet
Enlarged nerves, especially those around the elbow (ulnar nerve) and knee (peroneal nerve)
It is important to note that not all people with leprosy lose their fingers and toes. With early diagnosis and leprosy treatment, many of these signs and symptoms of leprosy can be prevented. Many patients with tuberculoid disease can even self-heal without benefit of treatment. In order to prevent problems with fingers or toes, people should avoid injury and infections to these areas and take their medicines as prescribed. Signs and Symptoms of Lepromatous Leprosy Lepromatous leprosy (also known as multibacillary leprosy) is the severe form of leprosy. Signs and symptoms of lepromatous leprosy can include a symmetrical skin rash more commonly found on the:
Elbows
Knees
Buttocks
Face
Ears
Wrists.
This skin rash can be:
Small or large
Flat or raised
Light or dark.
Other signs and symptoms include:
Thinning of eyebrows and eyelashes
Thickened skin on face
Nasal stuffiness
Bloody nose
Laryngitis
Collapsing of the nose
Swelling of the lymph nodes in the groin and armpits
Scarring of the testes that leads to infertility
Enlargement of male breasts (gynecomastia).
Complications of Leprosy Leprosy is probably the most common cause of crippling in the hands worldwide. Leprosy complications can include:
Blindness
Loss of fingers or toes following an injury or infection
An increased risk for arthritis and amyloidosis.

14.How does having leprosy affect someone physically?

Leprosy damages the nerves in the cooler parts of the body, especially those near the skin that relate to the hands, feet and face. If treated during the early stages there will be no loss of sensation or paralysis but if the nerves are damaged, then feeling and movement will not return. Leprosy can affect people in many ways, not just physically. In some countries, largely due to myths and superstitions, there is a great deal of fear associated with leprosy – people diagnosed with the disease can be stigmatised, rejected by their families and communities, they may lose their jobs and end up without a home or source of income.

15. Why do people affected by leprosy develop deformities ?

Nerve involvement starts quite early in a few cases, but in others occurs only late in the disease, especially if the disease is left untreated. Nerve damage leads to weakness of various muscles and loss of sensation in the hands and feet, so that the person no longer feels hot or cold, or even pain - this leads to unintentional injury, ulceration, infection and eventual damage of fingers and toes, and the well-known deformities of untreated leprosy. The muscles around the eye may also be affected and blindness is another important complication of untreated disease.

Efforts to prevent disability in people who already have some nerve damage due to leprosy therefore concentrate particularly on the eyes, hands and feet. Fortunately, the complications of leprosy, such as nerve involvement and eye damage, can themselves be treated, so that the problem may sometimes be reversed completely if treated early enough, or, if that is no longer possible, further deterioration can be prevented. As may be expected, more severe damage requires more complex and lengthy treatment, and is more likely to leave some residual disability or deformity.

16. What is the role of rehabilitation in Leprosy?

Some people who get leprosy are unfortunately left with some residual disabilities after the infection itself has been cured. The eyes, hands and feet are the parts commonly affected. In addition, many also face long-term problems within their family and community, simply because they once had leprosy. Rehabilitation involves a whole range of interventions that attempt to restore the person affected to as normal a life as possible.

There are two major categories of rehabilitation, and most programs now try to provide both in a holistic manner. Firstly, physical rehabilitation seeks to help people with their normal daily activities; the methods include physiotherapy and occupational therapy, sometimes specialized forms of reconstructive surgery to improve the functioning of the hands or feet and special treatment of certain eye problems. The aim is to help people cope with the physical demands of daily life.

The second major category is socio-economic rehabilitation, which seeks to help people rebuild their lives, including their relationships and household economies, both of which are often severely disrupted by having leprosy. Many people with leprosy face the loss of their jobs and divorce or other forms of rejection by society. Rehabilitation involves informing and reassuring the families and communities of the facts about leprosy, as well as developing specific interventions that help to restore dignity to those affected. One of the major aims is to empower individuals, enabling them to have more control over their own situations.

17. Once someone has lost feeling in their hands or feet, can it be restored?

A clawed hand or foot-drop can be restored with surgery, massage and physiotherapy. Surgery can also restore eyelid muscles so a person can blink again. But it can't restore feeling. People are encouraged to look after themselves by soaking their feet regularly, oiling their skin to make it softer and checking daily for any wounds.

18. What about the word 'leper' - is it okay to use it?

The word 'leper', like most labels, is offensive; people shouldn't be defined by their disease. But leprosy through the ages has provoked great fear in many societies, largely because of misunderstanding. This fear is still prevalent in some countries and stigma is an issue that leprosy-affected people have to face. For some it even means being rejected by their communities, or divorced from their spouse. It can be tough for people affected by leprosy to get the help they need.

19. Can everyone get leprosy?

No. Have you ever seen everyone, around you, suffering from all the diseases? Are all sneezing & having running nose? Are all suffering from diarrhea and dehydration? Similar is the case of leprosy that everyone doesn't suffer from leprosy. It indicates that our body responds to different infections differently. This is individuals' capacity to resist a disease or infection, which is also known as immunity or resistance of the body.

20. What is body resistance/immunity?

Body resistance/immunity is the ability of the body to fight back the germ and prevent causation of disease. There are cells in our blood specially created for the purpose of fighting the infection. These cells have the capacity and power to recognize, engulf, digest and destroy harmful germs. Because of these cells and the capacities they have, our body is resistant to most of the harmful germs and bacteria, including the germs of leprosy....More...

21. What leads to development of disease?

When a germ enters our body, it tries to locate itself in a preferred location to nourish, enjoy and multiply itself. If the multiplication and nourishment is not controlled it causes disease. On the other hand, our body resists the spread of germ and aborts the further growth, multiplication and development of disease. If the body is not able to fight the infection the disease develops.

22. Why all of us don't develop all the diseases?

This is the capacity of individual body and their cells to identify and recognize a particular type of harmful bacteria. Different cells of different human beings have high or low capacity to fight a particular disease. E.g. if a capacity to fight common cold is high in a particular person, he'll not suffer from common cold. On the other hand there are certain individuals, who have low capacity to fight common cold and suffer from common cold easily....More...

23. Why everyone is not suffering from leprosy?

This depends on the individual capacity of a person to fight leprosy organisms. Through research it has been found that 95 - 99% of our population is resistant or can fight the leprosy micro organisms if they enter in their body meaning thereby that 1 - 5% of the whole population is prone to develop the disease....More...

24. Facts about leprosy

Leprosy is like any other disease caused by a germ known as Mycobacterium leprae. It affects mainly peripheral nerves, skin and other organs of the body and if not treated adequately, leads to disabilities & deformities....More...

25. Can I live with a person infected/suffering with leprosy?

Yes, because the disease is mildly infectious. However, it is mandatory that the person affected should take the MDT regularly.

26. What, if I marry a person affected by leprosy /patient?

Why not? Your married life will be as normal as of any other couple. If the person is treated with required doses of Multi Drug Therapy, (s)he is taken as cured.

27.Does the children of persons affected by leprosy have the risk of developing the disease?

Leprosy is not hereditary, susceptibility depends on Body resistance/immunity.

28. Can a leprosy patient be treated at home?

Yes, it is better to treat him/her at home.

29. Whether the treatment is life long?

No, only 6 or 12 months, depends upon type of disease.

30. Can leprosy deformity be corrected?

Yes, the deformities can be corrected, after completion of treatment, by reconstructive surgery.

31. Should a leprosy patient be accepted by the society?

Why not. The disease is least infectious, curable with effective Multi Drug Therapy (MDT). An infectious patient becomes non infectious after three regular doses of MDT. If detected early and treated completely, will not lead to development of disability or deformity.

32. Can persons affected by leprosy be employed?

Yes, a person affected by leprosy is not a threat to the fellow citizens/colleagues if (s)he is taking or has completed the treatment.

33. Which are the centers for rehabilitation of persons affected by leprosy ?

There are many centers in India, where besides vocational trainings, economic rehabilitation is also provided.

34. Can the leprosy treated patient with disabilities get the facilities of disabled persons?

Yes, there are provisions, wherein the facilities are provided through Ministry of Social Justice and Empowerment.

35. What are the rights of persons affected by leprosy , treated or untreated?

All should be considered as a normal citizen having the same rights.