A women in India has spent her life without a face after doctors told her family there was nothing they could do.

Khadija Khatoon doesn’t even know if she has eyes or a nose and her mouth is a small slit on the left side of her face.

The 21-year-old is thought to have neurofibromatosis, the general name for a number of genetic conditions that cause swellings or lumps, which has severely distorted her features.

Khadija Khatoon, 21, from India, is thought to have neurofibromatosis, leaving her with severe deformities

But despite her devastating deformities Khadija insists she is happy.

‘I'm made this way and I accept it graciously,’ she said.

‘I do what I can. If this is how I’m meant to be then I live with it. It’s not a matter of coping, I just live as I am.’

Khadija was born at her home, in Kolkata, West Bengal, Eastern India, to impoverished Muslim parents.

Her father Rashid Mulla, 60, and mother Amina Bibi, 50, realised something was wrong when she hadn’t opened her eyes at two-months old.

'She was born with thick heavy eyelids and she looked different to my other children at birth but we didn’t think anything of it until we realised she couldn’t open her eyes properly,' said Amina.

‘When we took her to the hospital she was admitted for six months and they did lots of tests but doctors eventually told us there was nothing they could do.’

Khadija’s condition worsened as she grew up and the extra skin continued to grow out of control.

Khadija Khatoon stands with mother Amina Bibi. The 21-year-old said her parents were her 'world'

Khadija Khatoon, 21, taking an afternnon nap at her house. Even though she has never been able to see she insists she lives a happy life and does not want surgery after doctors told her it wouldn't work

The 21-year-old, who lives in Kolkata, West Bengal, has never been to school and says she doesn't have friends. But she insists she is happy in the company of her parents and family

‘Because the doctors told us there was nothing they could do we never went back to them,’ Amina added.

‘And as Khadija got older she refused any help.’

Khadija has never been to school and has learnt all she knows from her two brothers, Rutpaul 28, and Muzzafar, 25, and three sisters who are now married and left home.

WHAT IS NEUROFIBROMATOSIS? Neurofibromatosis is the name of a number of genetic conditions that cause tumours to grow along the nerves. Tumours are swellings formed by a growth of cells. In most sufferers, their tumours are usually non-cancerous. Neurofibromatosis type 1 is the most common form of the rare condition, affecting around one in 3,000 births. Sufferers are born with NF1, although symptoms often develop over a number of years. The severity varies considerably from person to person. In most cases it causes: pale, coffee-coloured patches with smooth outlines, known as cafe au lait spots

soft, non-cancerous lumps on or under the skin Around one in three people also develop a range of further health problems: high blood pressure

a curved spine

learning difficulties and behavioural problems

a type of cancer known as malignant peripheral nerve sheath tumours, which affect around 10 per cent of those with NF1 The condition is caused by a genetic mutation, where instructions that are carried in all living cells are scrambled in some way. There is currently no cure for the illness, instead patients are regularly monitored. Treatment can include surgery to remove tumours. Source: NHS Choices Advertisement

Khadija said: ‘I don’t have any real friends but I have my family. My family is my only friend and I love them dearly. My parents are my world. I don’t talk to strangers.

‘This is who I am and this is the life I live and I fill my days sitting and thinking, talking to my mother about life and going for walks near my home. I like drinking tea. I am happy in this life.’

Although many people who have the condition inherit it from one of their parents, up to 50 per cent develop it randomly from a gene mutation before they are born.

Despite their alarming appearance, the growths and swellings - called neurofibromas and caused by a growth of cells - are not cancerous or contagious.

Khadija’s brothers work in a bakery earning 7,000 Rs (£70) a month, but her father doesn’t have full time work, managing only occasionally to sell garden fruit at the market.

Khadija hopes the government will come forward and help with the family’s finances.

She said: ‘If only the government would see my position and help me, I would like that.’

However, she insists she does not want surgery for fear of risking her life.

Her mother said: ‘Doctors told us when she was a baby that if she attempted surgery she could die, so we have lived with that fear.

'Now that Khadija is much older she has decided herself that she doesn’t want to have surgery. She doesn’t want to risk dying.’

Dr Anirban Deep Banerjee, a neurosurgeon from Apollo Hospital, in Kolkata, said tests would confirm the illness.

He said: ‘I believe she is suffering from neurofibromatosis but to confirm we would need to do a gene test.

'There's a possibility she has a tumour inside her face which could be fatal.

'Right now there is no way of knowing if she has tumour inside the extra skin and if left they could kill her.

'If she's willing we would need to do a lot of tests to determine how successful surgery would be.’

Local government officer, Rupak Dutta, 52, from Kolkata, flagged the situation after seeing her on the street last week.

He said he felt compelled to do something and posted a photo of Khadija on Facebook urging people to help.

‘I was walking to my office the other day when I spotted her,’ he said.

‘I’d never seen such a face. I have a 13-year-old daughter and I thought what if she was my daughter?

'I didn’t even notice tears were falling down my cheeks. I have limited sources to help but I thought the power of social networking would surely help so I posted her photo on Facebook.'

Rupak is now in talks with local NGOs who will help Khadija meet with specialists to discuss possible surgery.

A Crowdfunder page has been set up to raise funds for Khadija: http://www.crowdfunder.co.uk/help-khadija

Khadija Khatoon, 21, ith her father, Rashid Mulla, 60 and her mother Amina Bibi, 50 at her home in Kolkata