Leprosy

Leprosy is one of the oldest diseases of mankind and has a unique social dimension. In both eastern and western cultures, fear of the disease has existed from ancient times. In no other disease have individuals been made to leave their families and communities and forced to live as outcasts in separate colonies or settlements. For many of the men and women affected by leprosy, simply overcoming the infection is not sufficient to allow a straightforward return to their previous life-style. The World Health Organization estimates there are some two to three million people worldwide with significant disability due to leprosy.

Until recently, those abandoned by their families were cared for in institutions which provided care and shelter. Since the treatment lasted for many years, they were kept in the institutions as permanent residents. They were engaged in different occupations like agriculture, animal husbandry, weaving and tailoring. Such an approach was considered 'rehabilitation'. Yet in that system, individuals became totally dependent on the institution for survival. There was no possibility of restoration or reintegration within family or community.

With the advances in treatment procedures and surgery, this institution-based 'rehabilitation' has become outdated. Through social and economic rehabilitation, people cured of leprosy are helped to regain their place in the community. Opportunities are developed to help them find productive employment, to contribute to the economy of their family and to live with dignity as useful and self supporting members of the community. Family and community support the rehabilitation process.

SMKS' main concentration is now on the eradication of leprosy from the country. SMK feels proud in executing National Leprosy Eradication Program (NLEP) of the Government of India, with its own resources, without any monetary assistance from the government. The organization's Survey, Education and Treatment team from 1992 till date has examined close to 1.3 million people in and around areas of Jaipur for symptoms of leprosy and has also detected and treated over two thousand cases of this disease.

Multi Drug Therapy came into wide use from 1982 and National Leprosy Eradication Program (NLEP) was launched in 1983 with the objective to control the disease in all the known cases of leprosy. To strengthen the process of elimination of Leprosy in the country, the first World Bank supported project was introduced in 1993. Since 2004 the program is being continued with Government of India funds with additional support from WHO and ILEP organizations. After integration of leprosy services with General Health Care system in 2002-03, leprosy diagnosis and treatment services are available free of cost at all the Primary Health Centers (PHCs) in all the districts in India.

Although the prevalence has come down at national level, Yet large number of new cases were detected during the year. New cases will continue to occur and will have to be provided quality leprosy services through existing GHC system for early diagnosis and treatment. Further there are few districts & blocks with prevalence rate of more than 2/10,000 population that need extra focus. The future strategy of the programme is to further reduce the leprosy burden, provide quality leprosy services through GHC system, enhance disability prevention and rehabilitation services, reduce stigma and discrimination, capacity building of GHC staff and strengthening monitoring and supervision.

Social and Economical rehabilitation is a unique task. The approach may not be duplicated between places or even from one person to another. But yet Sarthak Manav Kushthashram is on way to release the burden of society while providing dignity and quality in the life of persons affected by leprosy.

Leprosy is a disease, which still strikes fear in the societies as a mutilating, disfiguring, contagious and incurable disease. Because of the horrifying nature of the enigmatic physical disfigurement and since no cure was discovered until the 20th century, leprosy has, for centuries, been a highly stigmatizing disease. Though leprosy is not a disease of the poor, yet it affects poor to a much greater extent because of their social and economic vulnerability. The stigma attached to leprosy leads to loss of employment even before manual labor becomes more difficult due to disability, which often results from late or no treatment. It also leads to exclusion from society, causing physical and emotional distress. Even to this day, when leprosy is completely curable with MDT (multi drug therapy), some parts of India uphold the belief that leprosy is a divine curse, a punishment of the past sins, and a result of immoral sexual behavior. These beliefs reinforce the image of the 'leper' as being physically and morally unclean, to be blamed for contracting the disease and therefore to be ostracized.

Leprosy Shelter Home at Galta road:- This is the first centre where SMK started its activities in 1986. Today this is one of the biggest centres of SMK where leprosy patients and leprosy cured people are successfully provided treatment and rehabilitation services. These people are having following facilities and services at this centre:-

• Accommodation
• Leprosy Treatment & Care
• General Health Care
• Employment Training
• Educational Support

Currently this centre has a total 75 people both male and female of 35 families as its inmates. Out of them 65 are leprosy affected people and 10 are healthy children of themselves. A well equipped dispensary has been set up here, which provide most effective treatment and care to leprosy patients by equally qualified and experienced doctors and paramedical staff. Here patients are regularly monitored for any re-occurrence of symptoms of the leprosy. Patients and their families are also educated to maintain the required hygienic conditions. Some of the cured patients voluntarily provide their services in this work of nursing and care of leprosy affected patients.

The main objective of the SMK is to make India free from Leprosy and make them self- reliance. SMK is also running a rehabilitation center and at this center vocational training is imparted to them & their dependents

SMK endeavors to improve the health, livelihood and rehabilitation of leprosy affected people and their communities including their children in Rajasthan. SMK is also looking after the education to the children of people affected by leprosy. Some of the children have completed their academic education and now they are getting vocational education / training.

Free of cost MCR:- SMK is proud to be the only institution where MCR (Micro Cellulose Rubber) chappals, which are known as 'Jaipur Sandals', are being made available free of cost to the leprosy patients coming from different parts of the country. SMK even provides for the free boarding and lodging of such patients. These MCR chappals have benefited the ulcers in foot of leprosy patients. This work has drawn a great attention of all, because the disabled inmates of this Galta Ashram make the chappals for their destitute brothers and sisters across the country. These rejected, heart broken people perhaps feel the pain of ulcers worse than anybody else.

Financial Supports:- The people affected by leprosy who are residing in Ashram are not financially well due to non availability or scanty chances for increasing their income. We have an idea to give them micro finance along with a few part of loan as a subsidy, so that they can start their small business. If they do their own business after having financial assistance they can raise their income and their standard of living will definitely be high and they can pass their life in a better manner.

Free houses and bearing recurring expenses:- The inmates of Sarthak Manav Kushthashram are residing in cemented/bricks houses, but they are very old and needs to be repaired. This repair is required urgently otherwise the condition of the houses will be deteriorated. Although we are spending much amount on their repairing. SMK pays their light and water charges and bear the cost of maintenance of electricity.

Social Security:- Residents of the ashram are very old and weak. They are not in a position to undertake any work. SMK is providing them pension for their maintenance. SMK has deployed on handloom, printing unit, making carpets etc. to the resident of the ashram. Although they are very weak and can not give the due delivery of goods for their poor fitness, The children of the inmates are attending school and collages. Their fee is being borne by the SMK, and also the uniform, stationary viz. books, notebooks etc. are being provided by SMK.

Self- Advocacy:- SMK is fighting with the government for their human rights. SMK has also taken up the matter with the government for their BPL cards and to increase their monthly pension. SMK give the awareness to the general public against the stigma. The pamphlets are also being distributed amongst the general public.

Employment based training programmes:- are given special emphasis here so as to make leprosy patients and cured people more confident and self-reliant regarding earning their livelihood. Weaving, Printing, Flour & Spices Grinding and Tailoring etc. are some of the trades in which they are provided training. After receiving the proper training they work together here for the in-house production of bed sheets, towels, napkins, surgical bandages, cloth etc. Some of them are also working outside to earn their livelihood along with the general population. With this they reintegrate with the main society.

Products made here are already being supplied to various hospitals, nursing homes and other consumers. Nomades a French NGO has already initiated sales of these goods through weekly markets in southern France. These products are being sold by at different places through the exhibitions, sale and shops etc. Some of them are being also purchased by the visitors. Now we are receiving orders in advance for these items from different people and institutes etc.

Adequate arrangements have been made to provide formal education to the children here. For this purpose one teacher has been appointed from outside and one leprosy patient is supporting him in the educational activities. Apart from this, children of leprosy patients are also going outside to receive the higher education along with the children of main stream society in reputed schools and colleges. This gives them a sense of satisfaction and confidence.

SOCIO ECONOMIC REHABILITATION

The Economic Advancement Movement run under SMK has uniquely developed compared to other NGOs and has received attractive attention in the society. It was the result of the treatment of persons affected by leprosy with confidence and treatment together with self supporting and economic activity and change of the way of thinking through monitoring.

The problem is not yet completely solved but considerably progress is being made. By promoting economic advancement with right thinking and hard labour, SMK has achieved perfect rehabilitation with relief for painful disease and freedom from poverty, human dignity is certainly restore.

Social and economical rehabilitation of persons affected by leprosy is a major priority of SMK and its members branches. After leprosy control in Rajasthan State, major reorganization is being given to the importance of socio economic rehabilitation as a vital aspect of leprosy work. There is now the opportunity to develop new area of expertise based on the compassion for individuals which has marked leprosy services in the past. Several programmes as mentioned here are run with adopting innovative approaches which benefit those in need and enhance their dignity.

We often repeat and reflect on our own experience of one Kushthashram to another before applying their conclusions in a new situation.

Policy of Non-discrimination

SMK maintains a policy of non-discrimination and will not be prejudiced by race, caste, gender or religious belief. In particular, SMK has a strong emphasis on gender equality, with appropriate representation of women in its Governing Body is consisting of women. In addition, SMK is also involved in a range of projects designed to empower the women.