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HEALTH EDUCATION IN LEPROSY CONTROL
HEALTH EDUCATION IN LEPROSY CONTROL AND PREVENTION OF DISABILITY
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In a modern Leprosy “S.E.T.” Control Programme, Education is almost as important as the Treatment, if not more important. In S.E.T. programmes, “S” stands for for Survey, “E” for Education and “T” for Treatment. There is now real hope that, even if we may not be able to eradicate leprosy, at least, in the fore-seeable future, we may be able to bring it under control so that it no longer is a public health problem. Some believe that by the year 2000, leprosy will be “eliminated” as a public health problem and by “elimination”, they mean a prevalence rate of no higher than 1 per 10,000. I believe that, until we have a anti-leprosy vaccine and are able to innoculate every person within an endemic country, there is just no way that we can be absolutely sure of total elimination as we have seen in relation to smallpox. In our fight against leprosy , we need to remain vigilant.
While we are seeing remarkable cures of so many patients, since the introduction of Multi-Drug-Therapy (MDT), unfortunately, we are still detecting nearly 600,000 new cases each year and that number shows no sign of falling . Given the fact that the incubation period, on the average, falls between 2 and 5 years and that some patients have been known to have become infected for up to two decades after contact, there is no way that we may say that after the year 2000 we may forget all about leprosy. Even if all present patients under treatment were to be fully cured of the disease, many already, through late detection and lack of health education, have suffered unnecessary nerve damage and consequent disability, deformity and sometimes blindness. Even if they are bacteriologically cured by the year 2000, they may still need physiotherapy, surgery and rehabilitation. We may be able to kill off the bacteria but we cannot return the sensitivity to areas of the body at risk of injury. Does a person cease to be a leprosy sufferer after he or she has become bacteriologically “negative”? Unless that person has suffered no nerve damage and manifested no outward signs of the disease, we have to say “No”. “Leprosy” is associated not only with bacilli but also superstition, ignorance and stigma and this is where Health Education is so essential, that the true facts be made known to the patients and public in general. As I type these few words, there are those being infected by M.leprae whose disease may not become manifest in terms of skin lesions, nerve damage, ulcerations, deformity and blindness until the year 2020 !
Particularly in religiously conservative countries, where women are oppressed and often hidden away if found to have leprosy, the disease may not be brought under control, especially if the female victims are of the lepromatous, multibacilliary infectious types. In Bangladesh, in order to detect such female victims, I tried to introduce female paramedics, however, they were not accepted by the community because they were seen as females usurping the male role! Women were not meant to ride bicycles and motor-bikes! They were not meant to be so openly active within the society!. Even their male colleagues within the para-medic Control Team, were reluctant to take orders from female staff who happened to be more fully trained and experienced! This seems to be a serious fault in all males of whatever conservatively religious persuasion - “women must be kept in their place”! They wanted the females to be kept “out of sight” doing more “menial” duties at the base clinic, even though they were needed desperately out in the field, trying to access the homes where female sufferers were forcibly confined. Some families feared that if it became known that they had a leprosy sufferer as one of their kin, it would make it impossible for other family members to secure marriage partners.
The most commonly asked questions re. leprosy are:- (1) Why do many patients try to conceal their disease even from intimate family members and their doctors? (2) Why do family members try to hide away their own kin who have leprosy? (3) Why are people - victims and non victims alike - so afraid of leprosy? (3) Why do so many patients remain undetected and their disease untreated? (4) Why do we find so many misconceptions and superstitious concepts about leprosy? (5) Why is there such a high absentee rate of patients attending “leprosy” out-clinics? The answer to each of those five questions is the same :- Because of a lack of Health Education.
Misconceptions, Misunderstandings, Superstitions -- about leprosy are more than about any other disease. - (1) Many people equate leprosy with a grossly deformed beggar with horrific ulcerations when, infact, in the early stages of the disease, before there is nerve damage, there are no deformities, ulcerations, blindness etc. - (2) Many imagine that only the poor, darker-skinned people in hot, tropical, “Third World” developing countries are at risk of catching leprosy, when, in fact, any person of any race, who has insufficient “cell-mediated” immunity is at risk if exposed to the bacillus. Leprosy was highly endemic in Britain in the Middle Ages and the Leprosy bacillus, M. leprae, was first discovered by Dr. Gerhard Armauer Hansen, in Norway (a cold, “Western” country), in 1873. (3) There are those who imagine leprosy to be a “Curse of God” when, in fact, it is a disease like any other disease and, unlike AIDS, etc., is completely curable and all its deformities preventable. - (4)Some imagine leprosy to be a “flesh eating” disease in which fingers and toes “drop off” when, in fact the living leprosy bacillus is totally harmless and unable to “eat away” anything, because it has no teeth!!. In fact, it is not the living bacillus that is causing the damage but rather the body’s immune system violently reacting to the dead leprosy bacilli or rather the antigens liberated by the dead and dying M. leprae. (5) Leprosy is thought to be a “dreaded skin disease” when in fact, it is a disease which primarily attacks the nerves - the COOLER peripheral nerves in particular. The skin and other tissue are only secondarily affected. - (6)Leprosy is thought to be a highly infectious disease when, in fact, of all the communicable diseases, leprosy (Hansen’s Disease) is the least contagious. (See “The Guiness Book of World Records” under “D” for Diseases) This is because the majority of cases, worldwide, are of the Paucibacilliary (Tuberculoid) types which are relatively non-infectious. Only about 25%, on the average, are of the Multibacillary, Lepromatous types which are infectious. - (7) Some think Leprosy can be caught by a “Touch” from one with leprosy when, in fact, a person has to be in prolonged, intimate contact with a “positive” case before being able to catch the disease and then only about 5% of the human race (those with an immune system with a “T” type lymphocyte deficit) are at risk. It is not through the touch that leprosy is spread but it is now believed that nasal and throat droplets discharged by untreated, lepromatous patients is the main means of transmission. - (8) Some think that the suppurating ulcers on hands and feet are teeming with millions of leprosy germs when, in fact, rarely are leprosy bacilli seen in the pus and discharge from such ulcerations, even of lepromatous, infectious cases, where those ulcers are the result of injuries to anaesthetic parts which have become damaged by secondary infection. - (9)Many believe that once a person contracts leprosy, it is inevitable that deformity, ulceration and, perhaps blindness will follow, when, in fact, all the ulceration, crippling deformity, disfigurement and blindness are totally preventable. - (10) Some think that the treatment is life-long when, in fact, through Multi-Drug-Therapy, leprosy can be cured in as short a period as 6 months (for Paucibacilliary cases) and at least two years for Multibacilliary. - (11) It is thought by some that the cost of treating leprosy is exhorbitant when, in fact, leprosy, if detected in the early stages, before there is any nerve damage, in most cases (because most are Paucibacilliary) it is one of the cheapest diseases to treat, because there is no need for physiotherapy, surgery and hospitalisation etc.. However, once nerves have been seriously damaged or destroyed, in terms of treatment, hospitalisation, physiotherapy, surgery and rehabilitation, it is one of the costliest of all diseases to treat. - (12)Some people still believe that leprosy sufferers should be isolated from society when, in fact, there is no need to isolate them because, after only 48 hours of receiving MDT and Rifampicin in particular, the bacilli even in a lepromatous, infectious patient, are rendered “non-viable” and, under the microscope are seen to become fragmented and unable to infect another person. Nevertheless, treatment of a Multibacilliary patient should be continued for at least two years. - (13) Some think that because a skin patch does not cause discomfort such as itching, pain or burning sensation, it need not be reported to the doctor. Sometimes a leprosy hypopigmented, anaesthetic patch may be on a part of the body (such as the back) where it is not seen so it causes no concern. This is why the disease in many patients spreads because they are not aware of the need to examine themselves regularly, including the back and buttocks. Health Education reminds people in endemic areas to be vigilant in looking for early signs. These could also include areas of the skin which are not sweating and are slightly warmer, because the autonomic nerve which activates the sweat gland has been damaged or destroyed. - (14) It is imagined by some that all serious ulcerations of the foot are due to leprosy and society often rejects such persons as “lepers” ( a horrible word we really should not use) - outcastes when, in fact, they may have diabetic ulcers. (15) Similarly, patients with Bell’s Palsy, Carpel Tunnel Syndrone, Burgeis Disease, Vitiligo (Leukaderma) often image that they have leprosy and, because of fear, fail to present themselves for examination. Health Education informs the public that there are many (perhaps up to 28) conditions that can be mistaken for early and / or late, neglected leprosy. In young children, hypopigmented patches on the face may not be an early sign of indeterminate leprosy but may be due to a protein and vitamin deficiency. An improved diet may often solve the problem. Health Education informs the parents to present their children for examination. Today, rather than calling the clinics “Leprosy” clinics, we prefer to call them “Skin Clinics”, where people feel less threatened and afraid to present themselves. - (16)Some people think that all light patches on the skin are those of leprosy when, in fact, they may be those of Vitiligo and protein/vitamin deficiency (as already mentioned) or perhaps some fungal infections such as Tinea Versicolor, Naevus Anaemicus etc.. - (17) Some think that once hands and feet become anaesthetic, ulceration is inevitable but the Health Educator teaches the patient how to protect the numb areas by using pot-holders, gloves, tools with sponge-padded handles etc., wearing protective microcellular rubber sandals and how to exercise weakened muscles where their activating nerves have been damaged and how to mechanically lubricate dry eyes to prevent blindness. Health Education is of prime importance in Leprosy Control.
FOR MORE INFORMATION, SEE :-
THE LEPROSY MISSION INTERNATIONAL.
INTERNATIONAL BENEVOLENT SERVICES
INTERNATIONAL FEDERATION OF ANTI-LEPROSY ASSOCIATIONS (ILEP)
AMERICAN LEPROSY MISSIONS
NEWSGROUP HANDLING LEPROSY - alt.support.leprosy
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PRACTICAL WAYS OF HELPING LEPROSY SUFFERERS
AN IMPOSSIBLE DREAM- Chapter 10
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