WAR ON DISEASE

( By Radhika Ramasubban, Bhanwar Singh & Nigel Crook )

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Harishankarís Tragedy

The Importance Of Following Through Long Duration Cures

In the Ramabai Colony ( on the Eastern Express Highway towards Ghatkopar) there was a stir in the narrow lanes. People were standing outside their little houses and watching as two persons, a man and a woman, entered each house in the lane. They were paramedical workers from a leprosy control organisation and were examining every single person for signs of leprosy. They were also showing inmates photographs of leprosy patients with a variety of early symptoms, and distributing leaflets about leprosy. Those who could read were answering the questions of their neighbours. In one or two houses in the lane, the paramedical workers had already identified persons suffering from leprosy and were advising them to come to the clinic for free treatment.

Sensing the stir outside, Ramsahai emerged from his house and quickly read the leaflet that was being passed down. Leprosy ! It seemed such a remote thing. He hurried back in. He had taken today off because he had so many financial details to work out before his elder daughter Kantaís engagement on the coming Sunday, details about dowry arrangements , etc.

Archana and Yashwant, the two Paramedical Workers ( or PMWís) were soon knocking on his door. They examined Ramsahai, his wife and their daughters Kanta and Meena. Yeshwant was carefully examining Ramsahais back again.

"What is the matter ?" asked Ramsahai a little impatiently. " I am happy that you have visited my house ; and this is good work that you are dong. But I have taken the day off to do some important work so please hurry. "

Yeshwant stared thoughtfully for a moment. " I am sorry to upset you ," he said. "but this little patch on your back looks like an early sign of leprosy. I donít suppose you Ďve noticed it ; it does not itch, pain or burn. It is most likely, of the non-infectious variety which is the commonest type in India. It is fully curable. But for that you must report to the clinic this week itself and start taking the treatment regularly. "

The family looked stunned. Leprosy in their home ! It seemed unbelievable ! Ramsahai sat down weakly. His lips moved silently. "What about my daughter ?" he finally managed to ask in a hoarse whisper. "She is to be married soon. Will it have affected her ,too?"

"No, all the other members of your family are free from any symptoms. And it is not herediatary. So you can go ahead with the marriage without fear, " said Yeshwant.

For the rest of the afternoon and at work the next day, Ramsahai was barely in his senses. The following day he visited the clinic.

"Yes, you have a mild form of leprosy, " confirmed the doctor. "But it should be a big consolation to you that it has been detected early. Today, with the powerful medicines available that can completely cure leprosy, it has become like any serious but curable disease. Like jaundice, typhoid, diarrhoea or TB, leprosy too is caused by a germ that enters the body and starts multiplying when it meets no resistance as in an under-nourished person. The medicines I would be giving you, do two things --- they prevent the germs from multiplying and they kill the ones that are already there. But in your case they will take up to 6 or even 9 to 12 months to do their job fully. So you must take the course very seriously and make sure that you have the required level of medicines in your body - not more and not less --- throughout the treatment period. For this type of leprosy which is a mild one, there are two medicines in the course, to be taken in combination. One has to be taken every day and the other needs to be taken only once a month. We give you the first to take on your own following instructins. For the other you are requested to come to the clinic one day every month when you will also be examined. "






LEPROSY IN BOMBAY

Leprosy is endemic in Bombay and all of us in the city are liable to breathe in the germs. However the persons who are rather more susceptible are the poor -- those who are under-nourished and lacking the defence to prevent the germ from multiplying in their body.

Since poor people are forced to live in slums where there is poor sanitation and general overcrowding, they become victims to the disease more easily than healthy people who live in better environments. Even within slums, it is the poorest of the poor who suffer most for they are the people who, by having to live in small, damp huts and not having sufficient money to buy adequate food, also fall ill more frequently due to other infections. The conditions of overcrowding in the local trains and buses also help in the transmission of the disease through the air. Because of the humidity in Bombay and general air pollution --- dust and smoke ---(see story on bronchitis ) germs tend to remain in the air longer.


"But what will be the timings ?" asked Ramsahai. "Iím on shift duty in the factory where I work. Suppose I miss coming one month, does it matter.?"

"Every tablet and every capsule taken at home and every visit to the clinic matters, " stressed the doctor. "I know it is difficult to be so meticulous when the treatment is spread over so many months but each disease has to be seen in its own terms and the length of treatment for chronic diseases like TB and leprosy is inescapable. It is crucial to your own complete recovery to take the medicine regularly. Let me explain. If you are irregular, the remaining germs in your body will develop resistance to the medicines and your disease can worsen and cause deformity.

"I will come every month and I will take the medicines regularly according to the instructions, " said Ramsahai sincerely. " I must get well , my family needs me. But doctor, suppose my daughterís in -laws take it out on her ? That is my greatest fear. "

"Since you have come for treatment early enough, nobody would notice that you have ever contracted leprosy and been treated for it.

It is only when the treatment is delayed or taken irregularly that deformities can begin to set in. If your daughterís in-laws come to know now and create a problem you can tell them that as soon as a person starts taking the medicines the concentration of germs in their body goes down and they cannot infect others unless they become irregular later. Take the help of the paramedical workers who visited you, if more convincing needs to be done. As you know, everyone in your family, including your daughter has been examined and they are free from this disease. "

On Sunday, Ramsahai and his family and guests waited for the groomís family to arrive for the ceremony. Ramsahai was nervous ; it was possible that somebody might have gone and reported the problem in his family to the groomís parents. It was difficult to keep things secret in a zhopadpatti. Also, they lived not far away, in another pocket of the same colony. The PMWs had said that the entire colony was going to be covered in their survey.

Indeed the groomís family already knew about Ramsahaiís health problem. With a face like thunder, the father with some of his relatives arrived at the spot.

"We are cancelling the engagement," he announced. " I cannot take the daughter of a leprosy patient into my family. We know everything . There is no need to explain. " And they turned to go.

Ramsahai was almost in tears. "You donít know everything, " he said in a pleading tone, " otherwise you wouldnít be speaking like this. You have a daughter . How would you feel if your daughterís engagement was broken up because you had typhoid ?"

"Donít be absurd, " snorted the groomís father. "Leprosy is not the same thing as typhoid. Itís different. "






WHAT IS LEPROSY?

Leprosy is caused by a germ. Like other germs it is in the environment around us, and all of us breathe it in some time or other. If we are healthy usually our bodyís natural defences quickly develop immunity to the germs. The germs then cannot multiply and cause disease. But if our bodies are weak, the germs enter unchallenged and could start multiplying.

One of the common symptoms of leprosy is a patch with no sensation . Many patches means the disease is spreading in the body. Very soon the germs attack the joints and destroy the nerves. That is how hands and feet get deformed. The tragic fact is that leprosy sufferers with the obvious symptoms of the disease are the least likely to spread the disease to others. The most infectious persons are those who look healthy until the disease is in its most advanced stages.

But inside their bodies the germs multiply and come out in the form of droplets when they sneeze or nasal mucus when they blow their nose.

Leprosy spread, therefore, when untreated infectious persons breathe our the germs and others breathe them in.


"It is different only in that its course of treatment is much longer than for typhoid. In the areas where poor people like us live in Bombay, we can easily contract infection, because of the unhygienic environment and over-crowded conditions we are forced to live in and because our wages cannot go far enough to buy us adequate food which is the single most important defence against disease.

Please believe me", pleaded Ramsahai, " I have spoken with the doctor. I have a responsibility towards my daughter, havenít I ? He has assured me that leprosy was never hereditary and that there are medicines now that can cure it completely without leaving any deformities. I have already started taking them. Please go by the new knowledge. If we take things under our control early enough, we can overcome any problems."

But the groomís party looked impatient and unconvinced. Leprosy was different ; of that they were sure. They walked away. The danger of the engagement being broken was looming large in Ramsahaiís mind.

When Archana and Yeshwant visited the area the next day they came to Ramsahaís house to find out how things had gone the day before. Ramsahai had not gone for work. Although he felt depressed about the engagement he was angry that people refused to listen and believe, even when told that there was hope for those ailments which were earlier thought to be Godís curse.

"WE will come with you to the groomís house and explain to them, " offered Archana. " After all, we have been trained to understand this disease. They cannot refuse to listen to us. "

At the groomís house Ramsahai, Archana and Yeshwant stopped outside ; this time the PMW were dong the convincing, their voices authoritative. They were stressing the need to keep up with the times and take new knowledge into account. The person rejecting their words most vehemently was Harishankar, the groomís maternal uncle. He seemed to have a bad cold and in between sneezing and blowing his nose, he was shouting at Ramsahai, " Speak up for yourself and donít hide behind the sari of this lady. "

He turned to the PMWs, "Donít try to fool us with your talk that leprosy is related to the conditions in which we live and that you have some great new knowledge of how it can be cured. I know that you have to be a person of bad habits to get leprosy. We are respectable people and we want nothing to do with a man like Ramsahai. Now go away and do the work which you are being paid to do and donít interfere in other peopleís family affairs. "

Harishankarís aggressive behaviour and his active participation in this scene had given Archana plenty of opportunity to observe his face. She realised with a sense of horror that he was going to become the tragic figure in this drama. She whispered to Yeshwant to examine his face.

"Why are you staring at me like that, " Harishnakar barked at Archana. "And you donít you dare touch me," he pushed Yeshwant away roughly. "Are you trying to add some mirch masala to your crooked knowledge and suggest that I too might be suffering from some terrible disease ?"

"In fact, sir, it is quite likely that in the last half an hour that we have all been standing here, you might have infected us all with leprosy, " said Archana who could not make up her mind whether to be angry with or sorry for this haughty man.

" Look at her presumption, " exclaimed Harishankar. " Brother, I thought we were being considerate in even agreeing to talk with these people. And now they are turning around and saying that we too have leprosy. Send them away from here, " he said to the groomís father.

"If we were still trapped in the old ways of thinking, " said Archana, " it would be Ramsahaiís turn to break this engagement. You have many of the symptoms of highly infectious leprosy - shiny oily skin, nodules on your ears, thinning eyebrows -- but because most people think leprosy is only deformities or at most white patches, you might never have got detected. And with every breathe, sneeze and nose blow you would have breathed out millions of leprosy germs. Whereas Ramsahaiís leprosy is not infectious at all and he cannot pass it on to anybody , more so since he has begun the treatment in real earnest. "

The authority in Archanaís voice was compelling. The people who had gathered at the scene could hardly believe what was happening. "It is almost like a scene from a film ," said one of the teenagers present.

Archana felt sorry when she saw Harishankar looking stricken. "Donít despair, " she said to him. " Yours too can be cured, only it will take longer than for Ramsahai, may be two years if you are regular and serious and you need three medicines instead of two. Come on Thursday afternoon to the Clinic at the Mitra Mandal. Our doctor, a skin specialist, will be there to examine you and put you on the course of medicines. And let us go ahead and perform this engagement ceremony at the earliest instead of quarreling with each other on the basis of wrong knowledge. There are better ways of relating to each other, such as being supportive when someone is unfortunate enough to get a major disease and motivating each other to seek early medical advice and to take the medicines regularly and in the right dosage. Very importantly, we can see whether we can do something collectively about keeping our surroundings clean and






TREATMENT FOR LEPROSY

If we seek early medical care, we can avoid the development of deformities. Often a single patch may go away on its own. But in those whose nutritional level is low anyway as in a poor person, it is better not to take this chance, for any further drop in the bodyís nutritional level among other things can start off the process of the germ multiplying.

There is now an effective and permanent cure for leprosy. This is a course of drugs called Multidrug Therapy ( MDT). As compared with many other infections such as jaundice or typhoid, it is a long course. For early cases it may be as long as 9 months and for more advanced cases even 24 months or longer until the infection disappears completely. It is worth going through with this course, however long, rather than suffer from the deformities that are more likely to come if the treatment is ignored.

Although the medicines are costly, there is a government programme to provide the entire treatment free of cost. Your nearest municipal hospital / dispensary will guide you.

But for the cure to be complete, it has to be taken regularly, in the correct doses, and for the entire period. It must not be stopped when you see that the patch is gone. Also, because the patient remains at risk of undergoing nerve damage and developing deformities due to neuritis, visiting the clinic once a month during the treatment period to be seen by the doctor is very important too.

It is precisely because MDT is a long course that it consists of two or more medicines to be taken in combination. This prevents the disease / germs developing resistance to any one of these medicines in the duration of the course.

Taking the medicine irregularly can develop resistance to one or more of the medicines in the body. Another reason for developing resistance is if one has to start taking strong medicines for another long cure as, e.g., for TB where some medicines are the same as those for leprosy but with different doses. It is important to know and understand the medicines you are taking, particularly when you are on a long-term course, and tell the doctor about treatments you are undergoing when you go down with any other minor or major health problem.

As with all strong medicines, leprosy medicines too must be taken with care. If you are very weak and anaemic, if you are already suffering from constant cold, cough or fever, if you are taking treatment for TB, if you have come down with jaundice --- you must inform the doctor. The treatment for leprosy might have to be delayed until you are first cured of your other ailments. Ultimately, although effective medicines do exist, it is best to prevent diseases through acting to improve the environment and generally trying to stay healthy.

A better --- cleaner, safer --- environment. A right to a job. Better wages to buy adequate food. More efficient provision in ration shops of foodgrains of better quality and adequate quantity. These are your fundamental rights.


airy because , ultimately, germs enter our bodies from the environment. "

But Harishankar did not go to the clinic that Thursday afternoon. He was not going to believe so easily someone who had humiliated him in public. He was sure it was a planned plot by Ramsahai and the PMWs. But the episode had got him worried enough to go to a private consultant.

"Yes, you do have leprosy," said the private doctor. "whosoever advised you has done you and the community a great service. I will put you on Multidrug Therapy or MDT for short, the new course of three medicines for leprosy which renders highly infectious cases like yours harmless in the shortest possible time. Come back to me next week. "

Two to three weeks of visits to the private doctor had drained Harishankarís savings. He wondered how much longer he could afford to pay for this expensive treatment. Around this time Ramsahai came to visit Harishankar. He found him in bed with fever, his face looked red and hot and he complained of severe pain in the joints, and that his urine had turned reddish.

" It is all because of your PMW friends, " he groaned. " They tricked me into believing that I had leprosy. And that expensive doctor also. The medicines have done all this to me because I donít really have leprosy. And I have paid so much to suffer all this. "

"These are reactions, reactions of your germs to the medicines. You mustnít give up the medicines and you must see your doctor again, " urged Ramsahai. " The redesigns is caused by one of the medicines and is harmless. It will disappear when the course is over. "

Harishankar could not bring himself to put aside another large sum for the private doctor. He continued to worry secretly. His attitude, however, prevented him from confiding in anyone. Soon, the PMWs moved into his locality and one day they knocked on his door. It was almost with a feeling of relief that Harishankar agreed to visit the clinic the following Thursday.

He told himself that Ramsahai had accepted his diagnosis and gone ahead with the treatment with courage and dignity. He had also tried to learn more about the disease and the pitfalls to be avoided in the course of the lengthy treatment. Through these acts, Ramsahai would definitely conquer his disease. Harishankar resolved to do the same.

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