What is Leprosy?
How do you catch leprosy?
Where does leprosy occur nowadays?
How is Leprosy treated?
Why do people affected by leprosy develop deformities?
Is it OK to use the word leper?
What is the role of rehabilitation in Leprosy?
Who should provide Leprosy services?
What about Human Rights and Leprosy ?
What is Leprosy?
Leprosy (also known as Hansen’s Disease) is an infectious 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.
Fortunately, antibiotics can now quickly kill the bacteria (germs) that cause leprosy, so the disease can be completely cured with a few months of treatment. If this is started at an early stage, most patients need never suffer the terrible complications of the disease. Nerve damage still occurs in some patients, but it can often be reversed with other medical treatment when detected early. When it cannot be reversed and the person remains with some disability, there are many different strategies of rehabilitation to help him or her live as normal a life as possible.
How do you catch leprosy?
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.
Leprosy is probably spread like the common cold, but is much less contagious than
| Mycobacterium leprae | |
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| Microphotograph of Mycobacterium leprae taken from a skin lesion. Source: CDC |
the cold, or influenza. 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.
Where does leprosy occur nowadays?
Leprosy remains endemic in poorer parts of the world. The number of new leprosy cases reported worldwide in 2009 was 244796 and India currently has 55% of all new cases detected globally.
In considering the impact of leprosy it is not only the number of new cases being detected and treated that has to be taken into account, but also the huge number of those cured of the disease and living with the consequences of leprosy be it deformity, stigma, social exclusion etc.
It is estimated that probably at least 1 million people in India are living with some permanent disability due to leprosy, although the exact figure is unknown.
How is Leprosy treated?
As a bacterial infection, leprosy can be very effectively treated with certain antibiotics; the bacillus can be easily killed. If there has already been damage to the nerves, however, antibiotics alone will not restore function and other forms of treatment will be needed, including physiotherapy.
The first antibiotic to be widely used for leprosy was Dapsone, from around 1950 onwards. Dapsone meant a major breakthrough for millions of patients who, until then, had been considered incurable. However, many patients still had to take medicines for life.
In 1981, when resistance to dapsone was becoming widespread, WHO introduced Multi-Drug Therapy (MDT) which consisted of two regimens: 6 months of rifampicin and dapsone for Paucibacillary (PB) leprosy and 12 months of Rifampicin, clozafimine and dapsone for Multibacillary (MB) leprosy. MDT has been remarkably successful: there have been very few side effects associated with its use and over 16 million people have been cured of leprosy following its introduction.
Leprosy research has been given a great boost by the decoding of the genome of Mycobacterium leprae, the causative organism. This gives hope that more effective ways of managing the disease and its complications will be developed and that effective methods of prevention can be found.
In the meantime, efforts are being made everywhere to change attitudes, so that leprosy is seen as a disease like any other, which can be treated through the general health services, just as other diseases are.
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.
Is it OK to use the word leper?
No, for that would mean identifying a person by his or her disease. For centuries leprosy has been viewed with horror and the word ‘leper’ has come to mean outcast. The word ‘leper’ reinforces the already strong stigma against leprosy and contributes to the heartbreaking ostracism people affected by leprosy face. Using the word ‘leper’ today is considered inappropriate and an offense to the hundreds of thousands affected by this disease. The terms ‘person affected by leprosy or Hansen’s disease’ are used today instead.
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.
Who should provide Leprosy services?
Care for people affected by leprosy has, in the past, usually been made available in institutions that were not part of the general health services, because of stigma and the rejection of sufferers by normal society. When effective treatment became available with dapsone in 1950, its distribution continued to be organized outside routine health programs, for the same reasons - these were known as 'vertical' programs, as the whole set-up from the Ministry of Health down to the peripheral clinics was independent of, and unconnected to, any other services.
In recent years, however, there has been a shift in attitudes, whereby leprosy is seen as a disease like any other, which should be treated through the general medical services, just as other diseases are; this is termed integration. As with other diseases, difficult cases could still be referred to specialists, but these would be within, rather than outside the general health services. The process of changing from a vertical program to an integrated program is not simple, but there is general agreement that the advantages of integration (greater sustainability, better coverage, reduced stigma) outweigh the disadvantages (difficulty in maintaining the quality of services at the level of the peripheral clinic).
Much discussion at present relates to methods of guaranteeing the quality of services in the field, especially in areas where leprosy is not common.
What about Human Rights and Leprosy?
At the end of 2010, the United Nations General Assembly unanimously adopted a resolution approving principles and guidelines to end discrimination against people affected by leprosy and their family members.
This resolution marked the culmination of several years of lobbying of UN institutions by groups and individuals devoted to focusing attention on an overlooked human rights issue: the social discrimination suffered by people diagnosed with leprosy, a discrimination that usually continues towards them and their families even after they are cured. The stigma attached to leprosy has the potential to disrupt people’s lives in ways that no drug can cure.
Educational opportunities, job prospects, married life, family relationships, and community participation are all potentially threatened by leprosy. In some countries, discrimination is sanctioned by law, with leprosy treated as legitimate grounds for divorce, for example. Even members of the medical profession have been known to discriminate against patients with leprosy.
The principles and guidelines endorsed by the UN resolution go to the heart of the issue. They state that no one should be discriminated against on the grounds of having or having had leprosy. They call on governments to abolish discriminatory legislation and remove discriminatory language from official publications; to provide the same range and quality of health care to persons affected by leprosy as to those with other diseases; and to promote social inclusion.
But the UN resolution is, unfortunately, not a binding document. It can only recommend that states and civil society observe the principles and guidelines that it puts forward. It is very important, therefore, that this resolution is not simply filed away and forgotten. It must be used as a roadmap to bring about an end to the unjust and intolerable discrimination that those with leprosy face.
We all need to work towards a world where people affected by leprosy and their family members can live with dignity and play their part in the life of the community. It is time to bring an end to this gross violation of human rights. Such a world is long overdue.
Sources-ILEP,WHO,NLEP, Project Syndicate
