Shoba Kumari, 18
Shoba is from Khirhar, Madhubani in Bihar, India.
She lives with her mum and her two older brothers. Her father died earlier this year. She schooled until class 3, but stopped going when she got leprosy. Her parents are farmers. No one else in her family or extended family has had leprosy as far as she knows.
She got the first symptoms aged 12. She had patches and a swollen face. She was taken to see some of the village faith healers. They told her a witch cursed her. When she was taken to a nearby medical facility, doctors thought it was heat affect from the high heat that summer.
“I had some light patches, so they gave me some cream to put on that.” It was probably fungal cream. In the meantime symptoms were getting worse. “I started to develop ulcers on my hands and feet. It seemed like the medication was worsening the situation.”
“When I went to school, friends would stay away from me, and talk about my ulcers, saying they might catch them. Soon I became physically unable to go to school anyway as I had to walk.”
“Because I had these ulcers, my mother kept my plate separate from everone elses. My sister-in-law was also not very nice to me. She said I wasn’t allowed to hold their baby, or go near their food.”
“Actually I hated my body because of these ulcers, so I understood why my family was behaving like this. I thought maybe God gave this to me, this is why people don’t like me. I used to cry a lot.”
“But I want to cure this and have good health once again, so I still pray to God for that.”
“My family have spent about 20 – 30,000NPR on this. When I was 13, my father started investing money. I was eventually diagnosed in Raxoal (in India). I took MDT for one month, but nobody had told me anything else, and I didn’t know what to do, so I was sent to Lalgadh.”
“By the time I came to here [Lalgadh] two years ago, my hands and feet already had so much damage. It was here that I learned about leprosy in detail. I was given steroids for ENL ractions, and completed the MDT one year ago.”
“I’ve spent more of the past two years here than I have at home.”
Shoba still needs reconstructive surgery on her right hand, but the ulcer on her left foot needs to heal first. She does self-care each day in the evening.
“When I was 15, I had an arranged marriage. He made soap for a living. He was much older, but I don’t know what age. It was him that brought me to Lalgadh actually. He saw pus was coming out my ulcer. He phoned my father to inform him to collect me, left, and I never saw him again.”
“I’ve always been thinking inside that I’m not normal. People keep rejecting or leaving me. My father died two months ago, and I feel like he was the only one who really supported me.”
“When I first came to Lalgadh and my husband left me, a friend here put me in touch with this guy, and we got chatting online. Then after several months we met up in Janakpur, at the temple and got married about a year ago.”
“However it turns out he was already married with three children, and one of his daughters is even married. He won’t give me any money, and is always accusing me of cheating, so now I don’t want to talk to him.”
“He says he didn’t mind about my physical appearance, but says I’m going to Lalgadh to meet boyfriends!” (yes I know, this is crazy)
“Lalgadh and everyone here is my family now. People are loving here. It’s a hard environment when she wants to go home. If Lalgadh didn’t exist, my life would be no more.”
“My mother is a widow now, so when I’ll go home, I’ll look after her. But I want a family of my own, and if my second husband assures me he’ll take care of me, then I’ll go back to him. Although I’ve never been to his house.”
“We lived for 1 ½ months in Janakpur in rented accommodation.”
“I’m not happy living in my mothers house because of people’s behaviour. The family isn’t good to me and I don’t want to make life harder for them because of everything that’s happened to me. I’m just enduring life.”
“I want to be here, not there. Here I have control over my life.”
Shoba wants to learn how to sew. “I’ll be happy when I have no ulcer. In the winter especially it gets worse.”
Shoba seems to be laughing and joking around a lot with her friends on the ward. I notice she walks around a lot even though both of her feet are badly damaged and she still has this recurring ulcer. Every now and then I find her sitting by herself lost in her thoughts.
Photographed while on assignment for American Leprosy Missions and effect:hope.
Childrens Ward, Lalgadh Leprosy Services Centre. Nepal 2018
Shoba is from Khirhar, Madhubani in Bihar, India.
She lives with her mum and her two older brothers. Her father died earlier this year. She schooled until class 3, but stopped going when she got leprosy. Her parents are farmers. No one else in her family or extended family has had leprosy as far as she knows.
She got the first symptoms aged 12. She had patches and a swollen face. She was taken to see some of the village faith healers. They told her a witch cursed her. When she was taken to a nearby medical facility, doctors thought it was heat affect from the high heat that summer.
“I had some light patches, so they gave me some cream to put on that.” It was probably fungal cream. In the meantime symptoms were getting worse. “I started to develop ulcers on my hands and feet. It seemed like the medication was worsening the situation.”
“When I went to school, friends would stay away from me, and talk about my ulcers, saying they might catch them. Soon I became physically unable to go to school anyway as I had to walk.”
“Because I had these ulcers, my mother kept my plate separate from everone elses. My sister-in-law was also not very nice to me. She said I wasn’t allowed to hold their baby, or go near their food.”
“Actually I hated my body because of these ulcers, so I understood why my family was behaving like this. I thought maybe God gave this to me, this is why people don’t like me. I used to cry a lot.”
“But I want to cure this and have good health once again, so I still pray to God for that.”
“My family have spent about 20 – 30,000NPR on this. When I was 13, my father started investing money. I was eventually diagnosed in Raxoal (in India). I took MDT for one month, but nobody had told me anything else, and I didn’t know what to do, so I was sent to Lalgadh.”
“By the time I came to here [Lalgadh] two years ago, my hands and feet already had so much damage. It was here that I learned about leprosy in detail. I was given steroids for ENL ractions, and completed the MDT one year ago.”
“I’ve spent more of the past two years here than I have at home.”
Shoba still needs reconstructive surgery on her right hand, but the ulcer on her left foot needs to heal first. She does self-care each day in the evening.
“When I was 15, I had an arranged marriage. He made soap for a living. He was much older, but I don’t know what age. It was him that brought me to Lalgadh actually. He saw pus was coming out my ulcer. He phoned my father to inform him to collect me, left, and I never saw him again.”
“I’ve always been thinking inside that I’m not normal. People keep rejecting or leaving me. My father died two months ago, and I feel like he was the only one who really supported me.”
“When I first came to Lalgadh and my husband left me, a friend here put me in touch with this guy, and we got chatting online. Then after several months we met up in Janakpur, at the temple and got married about a year ago.”
“However it turns out he was already married with three children, and one of his daughters is even married. He won’t give me any money, and is always accusing me of cheating, so now I don’t want to talk to him.”
“He says he didn’t mind about my physical appearance, but says I’m going to Lalgadh to meet boyfriends!” (yes I know, this is crazy)
“Lalgadh and everyone here is my family now. People are loving here. It’s a hard environment when she wants to go home. If Lalgadh didn’t exist, my life would be no more.”
“My mother is a widow now, so when I’ll go home, I’ll look after her. But I want a family of my own, and if my second husband assures me he’ll take care of me, then I’ll go back to him. Although I’ve never been to his house.”
“We lived for 1 ½ months in Janakpur in rented accommodation.”
“I’m not happy living in my mothers house because of people’s behaviour. The family isn’t good to me and I don’t want to make life harder for them because of everything that’s happened to me. I’m just enduring life.”
“I want to be here, not there. Here I have control over my life.”
Shoba wants to learn how to sew. “I’ll be happy when I have no ulcer. In the winter especially it gets worse.”
Shoba seems to be laughing and joking around a lot with her friends on the ward. I notice she walks around a lot even though both of her feet are badly damaged and she still has this recurring ulcer. Every now and then I find her sitting by herself lost in her thoughts.
Photographed while on assignment for American Leprosy Missions and effect:hope.
Childrens Ward, Lalgadh Leprosy Services Centre. Nepal 2018