As a fifteen-year-old boy in a quiet village in the Bellary district of Karnataka, Hulgappa didn’t know his life would take such a dramatic turn. “I left a note behind assuring my parents that I would make a decent life for myself. I requested them not to come looking for me,” says  Hulgappa, now 52, resting his ginger hands on his knees comfortably as he sits with his friends in a park.

Hulgappa (right) with his friend Kariappa (left)

In 1987, when Hulgappa was keen on entering college, he contracted leprosy. “It doesn’t take a doctor to tell you that you have leprosy. Because of my illness, my sister faced marriage rejections repeatedly. My brother too faced neglect. Nobody was ready to touch our family.”

Leprosy, or Kushtarog, is an age-old disease in India and finds mention in ancient literature. It is a chronic infectious disease which is caused by a type of bacteria called Mycobacterium leprae. The disease affects the skin, the peripheral nerves, mucosa of the upper respiratory tract, and the eyes. Leprosy is curable and treatment in the early stages can prevent disability.

Apart from the physical deformity, the stigma attached to the ancient disease still haunts society despite the availability of an effective cure. “When I was younger, my parents once told me about a couple who had contracted leprosy in the village. They were shifted to a thatched hut in the middle of a farm where they were supplied food and water by family, until one night a mob came and set their hut on fire.”

Worried about his family, Hulgappa was left with no choice. He packed 4-5 rotis and set afoot to the Bellary district hospital seeking treatment for his condition. In the early 1980s, leprosy was still considered a public health problem in 122 countries. The common effective way today of treating leprosy is MDT (multi-drug treatment), which is a three-drug regimen of rifampicin, dapsone, and clofazimine. But back then, it was neither affordable nor accessible to Hulgappa.

“MDT arrived in 1989. I followed the treatment regime and was free from the infection after six months and continued the treatment for three years. Gradually, my arms and legs gained strength, which helped me grow in confidence that I can get back to life,” says Hulgappa.

In the 1980s, there were 5.2 million cases globally. By 2020 this decreased to fewer than 200,000. In the 20 years from 1994 to 2014, 16 million people worldwide were cured of leprosy.

India achieved eradication of leprosy as a public health problem in 2005 as per WHO criteria of fewer than 1 case per 10,000 populations at the national level. However, it still accounts for more than 50 percent of the world’s new leprosy patients. In 2022, India recorded 1,03,819 leprosy cases, out of which 40,051 were females, and 5,586 were children.

Leprosy, if not detected and intervened timely, can cause deformities and disability, one of the major reasons for stigma and disdain for leprosy patients. New leprosy cases with G2D or Grade 2 disability still occur in India, with 2,363 cases, including 55 children in 2022-23 (WHO).

Although Leprosy deformed Hulgappa’s limbs forever, he is grateful that his life was saved. “The doctor boosted my morale and handed me a certificate stating that I’m safe and employable. But knowing that I had nowhere to go back, I decided to come to Delhi.”

It’s difficult to make a living with leprosy history. So, Hulgappa had to resort to begging on the streets. “I begged straight for eight years, Eight years!,” he says with pain and anguish in his eyes. “I’m a 12th pass fellow, proficient in three languages: English, Hindi, and Kannada. I had to quit studying because of my condition. But I had no other option, so I begged for food. I felt that this will never get over. I was helpless. I doubted whether this will ever change,” he says, remembering the promise he made to his family while leaving home.

Biding his time, looking for an opportunity in life he found a light at the end of the tunnel. “I spoke to Sushma Swaraj about my problems and asked her if she can find me a job. Soon, I joined the Municipal Corporation of Delhi (MCD). I no longer had to beg for food.”

For Hulgappa, the departed politician Sushma Swaraj was nothing short of a blessing. He shared with Health On Air that she marked her birthday every year on February 14th by joining them in the leper colony for a celebration. Hulgappa recalls she used to sit with them and they had food together. He remembers her words, “As humans, we’re all diseased. The only difference is that yours is visible,” adding that after she passed in 2019, the entire colony was left in grief and felt orphaned, but her daughter continues to visit the colony on her birthday.

Entrance to the leper colony R.K Puram

Jeevan Deep Kustha Ashram is a small leper colony in R.K Puram Delhi with over 150 people who’ve made their home here. The tiny pucca houses with tin sheds are divided by a narrow arterial path. The colony is strikingly clean, with nearly every house decorated with plant pots. All houses have an electricity meter and everyone has a desert cooler fitted through an opening. 

Community kitchen inside colony premises

The residents operate a community kitchen under a shed. Due to a lack of LPG, they are forced to use choolahs (wooden fuel) to cook meals for the children. “Life is hard here, but we strive to keep it tidy and hygienic,” says Hulgappa, adding that during the monsoon, stagnant water creates a problem for residents prone to developing skin infections.

Hulgappa has taken a turn for the better. He got married in this colony after securing a job with MCD. “My wife was healthy, while I was a person with a history of leprosy. I told her that I had nothing to hide. I had a lot of love and care to offer only if there was anyone to accept me. I was honest in my approach and expressed myself with confidence. She agreed.” Today, Hulgappa has two kids with his wife who are undergoing educational training outside Delhi.

He emphasizes, “It takes six months to cure the infection. If anyone shows symptoms, immediately take him to the doctor. There’s no reason to be scared after that. But, like an ill-fated train, life changes tracks for the worse for us.”

Hulgappa has made multiple visits to his home village in Karnataka since then. His first visit to Bellary in 2010 was an emotional event. “My father wasn’t home. He had passed away. My mother wept inconsolably upon seeing me alive. It was so overwhelming for us. And she almost fainted with joy when I showed her grandchildren,” he says.

Upon asking whether he felt if life had been unfair to him, Hulgappa smiles back and says, “I’m grateful that I was able to find happiness and I know that I will not be sad in my life again.”