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Mum whose tobacco chewing 'caused daughter's skin condition' wants her 'dead or cured'

April 19, 2017  11:06

A mum wants her daughter 'dead or cured' as she admits her tobacco chewing habit caused her child's debilitating skin condition.

When Roshni Banu gave birth to Shama and she was diagnosed with the painful condition Lamellar Ichthyosis her neighbours instantly blamed the mum's habit.

The 22-year-old, who lives in a slum in Delhi, northern India, says her daughter's condition is getting worse.

Two-year-old Shama is in excruciating pain and has limited mobility and Roshni wants her daughter dead or cured.

She said: "I’m blamed by society for her condition. People say she is born like this because I chew tobacco.

"They often say my daughter was born this way because I’m cursed. It affects me a lot to face such accusations.

"It’s hard seeing my daughter suffer as it is but to face these comments also is very hard.’

Shama was born covered in a collodion membrane.

Roshni said she was scared to see her baby after she was born and was apprehensive about holding her.

She added: "She had very strange skin ‘Neither her eyes nor her nose or lips were visible. All we could see was dry and scaly skin which looked like that of a snake.

"I was really scared to see my own child like this. I was too scared to even hold her in my arms as her skin would fall off as we touched her.

"I was devastated to know my first baby was born this way.’

Shama’s condition has got worse since birth, which makes it difficult for the small family to get out and about.

In their small community Shama is treated as an ‘untouchable’ and is often called names like ‘ghost’ and ‘scary girl' while Roshni is taunted and blamed for her condition.

The young mum said: "We don’t take her anywhere because people stare at her.

"Due to her condition, even I’m trapped at home. Our lives have changed drastically since her birth. People don’t come close to her believing they’d catch the disease.

"But I hold her all the time, nothing has happened to me. Why is she hated so much?

"She is my daughter and a human being. She did not choose to be like. It’s not her fault."

Roshni and her husband Sabir Ali, 25, say doctors have told them there is no treatment or cure.

The worried mum said: "We just have to apply lotions and oils on her skin. She is mentally and physically okay but her skin condition makes her itch and sometimes her skin bleeds; she’s always in pain."

Sabir, who works at a publishing house and earns £110 a month, finds it difficult to afford the monthly bills for creams for his daughter.

He said: "As parents, we feel we are being punished. I want to do something for her but we are not financially strong and I do not know what to do.

"She is often left to suffer. She suffers deep cuts and bleeding during the dry winter months and during the summers she itches more from the sweating.

"We’ve tried visiting temples and mosques, bought home remedies but nothing has helped. Nothing has given her ease.

"We just want to make her life easier, but we don’t know how."

Dr Aayush Gupta, a dermatologist, at DY Patil Hospital, in Pune, has treated many patients suffering the same condition.

He said: "This child appears to be suffering from a genetic condition caused when a child inherits both copies of a mutated gene.

"The parents most probably carry one mutated gene. Unfortunately, like most genetic disorders there’s no cure.

"Instead, the girl requires extensive moisturising with special lotions which helps remove the buildup of scales. She also needs proper nutrition, especially vitamin D. She can also be put on a low dose of retinoid therapy.’

Dr Gupta said there is no concrete data for India but he believes approximately one in 250,000 individuals are born with this condition world wide.

Sadly, Roshni and Sabir are first cousins, which is common in India. But Dr Gupta believes such conditions often occur when marriages happen within a family.

Roshni admits they will not have any more children as doctors have warned them all of their children will be born this way.

But Dr Gupta said a genetic workup of the parents and the affected child will be enough to find the causative mutation, and then prenatal diagnosis at a twelve-week scan could predict whether the fetus is affected or not.

"But this service would be costly."

Roshni now fears for the future of her daughter.

She said: "I want her to study like other girls. I want her to have a good job one day but who will employ her looking like this?

"She is considered untouchable; and people say she will never get married and she’ll be a burden on me forever.

"Sometimes I want her dead, sometimes I want her cured. I wish I could give my daughter a better life than this."

NEWS.am Medicine

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