Lepers in a 'Leprosy-Free' Maharashtra

Sep 29, 2011, 08:29 IST | Priyanka Vora and Chetna Yerunkar

With the incidence of the disease on the rise in pockets of the state, the health department is planning to resume surveys to evaluate the exact number of patients

With the incidence of the disease on the rise in pockets of the state, the health department is planning to resume surveys to evaluate the exact number of patients 
Leprosy, which was reportedly eliminated from the state in 2005, has reappeared in Maharashtra. Recent studies have shown that the incidence of the disease has been on the rise in parts of rural Maharashtra. In districts like Thane, Dhule and Nashik, the prevalence rate is over 1 for every 1,000 members of the population, which certifies the disease as a public health problem, according to parameters set by WHO. As the state health department mulls its next step, MiD DAY visited two leper colonies, situated in Borivli and Thane, and discovered that the disease, as well as the social stigma attached to it, are far from being eliminated.

Home sweet home: The 50-year-old leprosy colony in Borivli (East) is
home to nearly 200 families. PICS/SAMEER MARKANDE

In 2010, an alarming 9,984 leprosy cases were reported in the state, and the number rose to 10,433 by March, 2011.

Dr P Y Gaikwad, joint director for the leprosy department of the Directorate of Health services, said, "We have studied the figures from September 2010 and August 2011. In this period, the prevalence rate of leprosy has reached the 1.03 mark, making leprosy a public health problem, as per the WHO norms. After the disease was eliminated in 2005, surveillance had been stopped. About 30 per cent of the cases are self-reported. The rest come up on our radar during the random surveys that we undertake. We have requested the Government of India to allow us active surveillance, so we can accurately gauge the exact number of people afflicted with the disease in the state."

Discriminated: Keshav Bhandare along with other leprosy patients at
their colony in Thane

Experts also fear that the figures obtained from the civic hospitals of Mumbai do not tell the complete story, due to the pervasive presence of the private medical set-up in the city. According to the figures obtained by the National Leprosy Elimination Programme (NLEP) for the year 2010, 718 leprosy cases were reported in Mumbai, with the numbers dropping to 598 in 2011.  "In Mumbai, not all leprosy patients reach the public health set up, as a considerable number of them are treated by private dermatologists. These patients can afford medication privately and thus remain tight-lipped about their illness. This phenomenon proves beyond doubt that there is a certain sense of shame attached to the disease," said S Kingsley of Alert India.

Speaking on the matter, Dr Gaikwad said, "It should not be forgotten that leprosy does not discriminate -- it can victimise any person, irrespective of his caste, religion, sex or social status."

A leprosy worker from Borivli said, "The recently diagnosed victims of leprosy belong to all walks of life -- some live in the slums, while others in the highrises. We recently diagnosed two children, aged 5 and 7, who live in an upscale building: there is no history of leprosy in their family either. Owing to greater awareness, parents and family members  gradually treat it like any other disorder."

"Leprosy is a painless disease with a long incubation period. By the time the symptoms become visible, the disease has progressed enough to cause irreversible nerve damage, which results in deformity. Since surveillance was stopped after 2005, more and more people are being diagnosed at advanced stages of the disease, when the visible deformities appear," said a senior doctor working with leprosy patients.

Dr Gaikwad said, "We suspect that a huge number of cases go unreported. The state has already identified 19 districts to conduct surveys, so these hidden cases are detected."

At Thane colony
At the leper colony in Thane, there are hardly 50-60 boarders, in stark contrast to the 1,000 patients who were allotted its 550 quarters when the government constructed the colony, back in the 1970s. Though the numbers have dwindled, residents claim that discrimination is still as rampant as it was. The labyrinth of lanes and bye-lanes leading to the colony serve to distance the colony members from the mainstream of society, buffering them from a hostile world.

Resident Gopal Khadse made the colony his home 30 years ago. He said, "I was 10-year-old when I was diagnosed with leprosy. I soon got accustomed to the discriminatory remarks from others. I never enjoyed formal schooling. I was taught how to sign my name by a benevolent man from Wadala hospital, also a patient of leprosy.

The government gave us a colony so we could feel safe here. Though people are more accepting nowadays, we still have to deny about our medical condition at times, in order to be treated equally. I often find myself telling others that the marks on my hand are from an accident."

Keshav Bhandare, another patient residing in the colony, said, "It took me almost 35 years to get a job in the municipality. Even when we go to the hospitals for treatment for common coughs and colds, the doctors and nurses keep asking us about the marks on our hands. It is difficult to always be in the public eye because of our deformities. We have to travel all the way to the leprosy hospitals in Mumbai, in order to avoid attracting attention and get treated for our other maladies."

At Borivli colony
At first glance, the nondescript colony tucked away in a quiet corner of the north-western suburb looks no different from any other chawl in the city. But the 50-year-old colony, reportedly the largest in the city, is home to nearly 200 families. Each of these families have moved to the colony because one or more of their members are afflicted with leprosy.

The headman Bhimrao Madhare welcomed this correspondent with a warm smile, and started narrating his story without being prompted, saying, "I was diagnosed with leprosy when I was in the sixth grade. The disease deformed my left hand. I came to stay in this colony about 35 years ago. I have grandchildren now, none of whom has leprosy."

Madhare lives in the colony with his wife, children and his grandson Vinayak. He added, "Initially, we found it difficult to get our children admitted to schools, but we have gradually gained a degree of acceptance in the society.

Children from our colony have become successful doctors and engineers. Society should not keep us at arm's distance."

He added however that their ordeal continue, as victims find it difficult to gain acceptance in professional spheres owing to their deformities.

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