Carlo Torriani

SWARGA DWAR

The conversion of a catholic missionary

presented by

Card. Simon Pimenta

PIME Publications, PIME Regional House, Eluru - 534 0-07, A.P., India

 LOK SEVA SANGAM

A success story

 Lok Seva Sangam (LSS) celebrate its silver jubilee, this book is published as a contribution to this celebration of 25 years of fight against leprosy.

 To understand that for the first time in history we can claim success against leprosy, this scourge present since biblical times, is enough to say that in the eighties LSS was having in its register more than 4000 names of leprosy patients; at the beginning of 2001 there are only 500. Since the beginning we cured more tan 15,000 leprosy patients. 

In these 25 years great advances had been made at least in five areas:

                 CURE. When we started in 1976 we could already say: “Leprosy is curable”. Since the fifties dapsone was the first effective cure for leprosy. Although the treatment was cheap, it was long and doubtful: Two years treatment for paucibacillary cases, all life for multibacillary and there where many cases of dapsone resistance. The policy of LSS was based on the consideration that leprosy is more a social problem than a medical one. The effort, then, was to convince people that leprosy is a disease like any other (health education); to identify cases, in society, at the early stage, simple patches on the skin, (survey of all the population); to convince them to take treatment, also if the patch is not prickling or painful.

We in LSS had been lucky to witness and to implement one of the most effective step in the cure of leprosy: the introduction of the multidrug therapy (MDT): dapsone, rifampicin and clofazimine, the first combination, followed by others, really efficacious against leprosy.

I remember coming back from Italy the first time, in 1976, with some boxes of Rifadin which I got  from

Le Petit in Milan. Rifampicin was just discovered in Italy. I think that LSS had been the first to use systematically rifampicin in Bombay. The wide spread use of MDT has revolutionized leprosy work freeing people affected by the disease from being “leprosy patients” all their life. The Government of India started supplying MDT freely to all leprosy patients in the middle of eighties. LLS since the beginning was giving free treatment to all leprosy patients.

                 DEFORMITIES AND DISABILITIES: In the last quarter of a century many advances have been made in our understanding of how deformities and disabilities linked to leprosy actually occur. Fingers and toes don’t “fall off as many one believed, and most of the deformities and disabilities associated with the disease can be prevented by early treatment and simple techniques, or, partially corrected by surgery and prosthetics. The horribly deformed leprosy patient of the past is becoming rare and rare as the older are removed from the scene by death. This also has helped reduce the stigma of the disease.

When I started taking care, with the Sisters we were only going to the so called “leprosy colonies”, Vile Parle first, Chunabhatti after, where the majority of patients were grossly deformed. We soon understood that this was not enough. If we wanted to prevent deformities we had to discover the early cases, those who were still living in society. When we took up the responsibility of Kurla and Chembur we were told that for every 50,000 population we needed a leprosy technician. That was the time we started  LSS.

LSS always had a physiotherapist, and now two, for preventing deformities.

                 CONTAGION: People fear leprosy because it is a contagious disease. Contagion means that the dreaded deformities, disabilities and ostracism associated with leprosy can happen to me if I associate too closely with a person affected by the disease. While still a lot is unknown about how leprosy is transmitted and why some get it and other don’t, the fear of contagion has also been greatly reduced in this last half century. Today we teach that not all forms of the disease are infectious; that 95% of humanity is naturally resistant to the disease; and that once in treatment, the person with the disease has little chance of transmitting it. A deformed case, as today, had surely been treated. Such news is a great relief to family members, professional workers and all others who come into contact with the person affected by leprosy.

The example of  many missionaries who, all over the world, were the first to take care of leprosy patients helped a lot to break down the fear of contagion.

                 SEGREGATION: The segregation of people affected by leprosy has been both a major result of, and also a major source of fear and stigma. In the last quarter of a century the institutional system of segregated leprosaria, leprosy dispensaries, special orphanages, settlements, and leprosy associations has been gradually disappearing as people realize that segregation is not justifiable for medical, financial or ethical reasons. Most people affected by leprosy are now being treated in integrated medical programs and more are gaining the self confidence to openly reveal their diagnosis and to speak out.

LSS since the beginning had been very sensitive to this aspect. Our motto had always been: ”To cure leprosy without segregation”. The word leprosy does not appear in our name. Our survey is to detect skin diseases. Our dispensaries are dermatological clinics. Our kindergartens are for all children.

                 PUBLIC EDUCATION: Another positive change in this period has been the increase in public education efforts to spread the good news that leprosy can be treated and cured, that disabilities are preventable, and that people affected by leprosy don’t need to be segregated. In an effort to get rid of the leprosy stigma, some countries have even officially changed the name of the disease to less stigmatizing terms like Hansen’s disease. They have only been partially successful. New translations of the Bible have also helped  to reduce some of the special religious significance of leprosy by substituting “skin diseases” for the word “leprosy” in the text.

LSS since the beginning have always had a full time health educator, and when the house-to-house survey was discontinued, the staff was re-deployed for health education.

 BUT THE WORK IS NOT FINISHED, leprosy is not yet eradicated, we still do not have a vaccine to prevent it. The prevalence of leprosy in society is decreased from 5 per 1,000 in India to 0.53 per 1,000.    But the incidence, or the rate of detection of new cases has not decreased.  That means that when we were having 4,000 cases under treatment, we were discovering 1,000 new cases every year; also now that we have 500 cases, we still discover 1,000 new cases every year. We only treat them quicker than before.  So all the structures for the fight against leprosy must remain in place, the guard must not be lowered. If we succeed, may God will, in treating all the new cases, nobody will reach deformity stage. So the popular idea of leprosy, which is connected with deformity, will disappear, but the fight must go on, to keep the positions achieved.

 As we celebrate the silver jubilee of LSS and congratulate ourselves for the achievements that have changed the pattern of work for leprosy control, we must commit ourselves to continue.  The definition of the disease leprosy may have been changed, but the literary meaning of “leper” still remain as equal to “segregation”. One battle may be going to the end but the struggle  against all kind of unjust segregation must continue.

The founders may retire, but LSS must continue as the reaching-out activity of the Christian community of Everard Nagar.