By Shaik Zakeer Hussain, TwoCircles.net,
Tiruvannamalai: When this correspondent received a mail from the Society for Welfare of Leprosy Patients and Rural Development (SWLPRD), the last thing he expected was to find himself at its office in Tiruvannamalai in next few days. First I had never heard of SWLPRD or its activities, neither I had any clue where Tiruvannamalai was. And being born and raised in Bangalore, leprosy was the word, which had almost been obliterated from our mind. I had never met a leprosy patient in my life and had no clue what to expect.
“Welcome to Tiruvannamalai,” said Mr Alagesan. “I was expecting you to be a 40 year old man, but you are too young, very good.”
Mr Alagesan is the founder and president of SWLPRD. He runs the society with the help of his wife A. Valarmathi and a quinquagenarian woman volunteer. After greeting both the ladies at his home door steps, I was directed to his office on the first floor. The office is made up of one desk, couple of chairs and posters symbolizing various religions and religious figures. There is one, half a decade year old HCL computer, which when turned on, the monitor screen ‘shakes’ ceaselessly.
Brothers Charles and Sudhakar.
He told me that he is a B.Com graduate, though he seemed to have spoken fairly good on the phone, I soon realized he had difficulty understanding my questions and I on the other hand, equipped with only an ability to understand a layman’s Tamil, was set on a difficult conversation.
Both Mr Alagesan’s and his wife’s parents had been leprosy patients. Carelessness and lack of medication had left them deformed and crippled from an early age. His father had spent the last 20 years of his life in a government run leprosy centre under horrible conditions; his mother too had passed away under similar circumstances. Seeing the difficulty faced by their parents and the suffering of many more families in his town, the couple with a help of few leprosy afflicted patients and with Rs. 500 started the Society for Welfare of Leprosy Patients and Rural Development in the year 1992.
“At first we started with helping out 5-10 patients and then we came in contact with a large number of afflicted people,” he said. According to his survey, there are 250 cases of leprosy in Tiruvannamalai alone. 250, he says are only those he has met, there are a large number of the population whose cases he is still not aware of.
Mr Alagesan then drew a ledger book to my attention, which had the names, addresses, age and the severity of the disease written down in Tamil. He said that most of these patients get basic treatment through the funds he receives for his organisation. “Dr. Ramalingam, who is in-charge of leprosy eradication in the state, visits these patients once every month to treat them. If their case is major, then I recommend them to the government run hospital in Karigiri, where they get free treatment,” he said.
Daily wage labourers in the field.
Some five kilometers away from Kilnatchipattu village is Malappan pody. We were here to see, what Mr Alagesan told me were the youngest known leprosy patients in the district.
Charles is a 15 year old son of a daily wage earner mother and a by-cycle repairer father. All the fingers on his feet are completely amputated and the skin has started to rot emanating a repulsive smell. His open wounds are surrounded by flies and most of the time he just sits on a concrete slab outside his house. His 11 year old brother Sudhakar’s condition is no better. Unable to walk, he came dragging himself to meet us, leaving a trail of blood along the muddy compound.
Ayuthi (left) with Mr Alagesan (right).
We met their mother, who works as a manual labourer close by, under the central government run Mahatma Gandhi National Rural Employment Guarantee Act (MGNREGA) scheme. Mr Alagesan says that under this scheme many villagers, including Charles and Sudhakar’s gets at least 100 days of paid employment a year at the minimum wage of 100 Rs. per day.
Both her sons, she says contracted the disease when they were only two or three years old, “At first the wounds were small and we didn’t realize what it was, until it had started to spread all around the body”.
Negligence and lack of awareness about the disease is the two main reasons, why it gets worse, Mr Alagesan says. Social stigma is another reason, why most people with leprosy try to confine themselves to their houses.
Leprosy is caused by the organism Mycobacterium leprae. Though easily curable, without proper medication it can leave those affected with disfiguring skin sores, nerve damage and progressive debilitation. Though many believe that it is transmitted by droplets from infected persons when they sneeze or spit, new studies have revealed that most affected people are naturally immune to the leprosy bacteria.
Ayuthi with the cow provided by Mr Alagesan.
Tamil Nadu has one of the highest reported cases of Leprosy in the country. The National Leprosy Eradication Programme (NLEP) March 2013 report shows that there are 3550 new cases reported for the year 2012-2013. While the incidence of new cases is dropping significantly in the country, in Tiruvannamalai and in many parts of the state it continues to be virulent.
73 year old Ayuthi contracted the disease, when he was 26 years old. When he was thirty two, he says, he visited a native healer in Trichy, who crushed some wild leaves against the wounds and lit fire to it. Every day of his life for the past forty seven years, he has lived a “disfigured” life. “He is still unmarried,” says Mr Alagesan .
“I don’t run a destitue home for these people, what I do is provide them access to treatment and help them live a dignified life,” he says. Mr Alagesan has undertaken many supportive projects in the past, which were funded by such institutes as the St. Francis Leprosy Guild, London and others. He recently started providing the disease afflicted families and individuals with a goat or a cow to enable them to live a financially independent life and not being dependent on others and worse still get down to begging. Though the funds have slowed down in recent years due to global financial crunch, he says he is expecting generous fundings during this month of Ramadan.
Contact details:
Society for Welfare of Leprosy Patients and Rural Development
No. 2, Sambuvarayar Nagar, So-Kilnatchipattu Village & Post,
Tiruvannamalai – 606 611, Tamil Nadu, S.India.
Email: [email protected]
Phone: Mr Alagesan 9597161518