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Woman with neurofibromatosis covered in tumours she cannot afford to treat

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  • Sarotin, 46, from East Jakarta, suffers from neurofibromatosis
  • It is a genetic condition which causes uncontrollable growths along nerves
  • The mother of four has suffered from the condition for three years

By Jill Reilly

PUBLISHED: 10:30 EST, 6 February 2014 | UPDATED: 10:30 EST, 6 February 2014

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An Indonesian woman whose body is covered by hundreds of tumours has been forced to flee her village after her family disowned her.

Sarotin, 46, from East Jakarta, is believed to be suffering from neurofibromatosis, a genetic condition which causes uncontrollable growths along the nerves.

The mother of four who only uses one name has suffered from the condition for three years.

An Indonesian woman whose body is covered by hundreds of tumours has been forced to flee her village leaving her children behind after her family disowned her

An Indonesian woman whose body is covered by hundreds of tumours has been forced to flee her village leaving her children behind after her family disowned her

Sarotin, 46, shows the tumors on her body at her home in East Jakarta, Indonesia
Sarotin, 46, shows the tumors on her face at her home in East Jakarta, Indonesia

Sarotin, 46, from East Jakarta, is believed to be suffering from neurofibromatosis, a genetic condition which causes uncontrollable growths along the nerves

Half her face has been obscured by a tumour as well as hundreds of smaller ones covering her entire body.

Widowed Sarotin, says she could not afford medical treatment in her home village in Bandung, West Java, Indonesia.

Neurofibromatosis is the name for a number of genetic conditions that cause swellings or lumps.

Half her face has been obscured by a tumour as well as hundreds of smaller ones covering her entire body

Half her face has been obscured by a tumour as well as hundreds of smaller ones covering her entire body

Sarotin visits a shop near her home in East Jakarta, Indonesia

Sarotin visits a shop near her home in East Jakarta, Indonesia

Sarotin, 46, shows the tumours on her body at her home in East Jakarta, Indonesia
Sarotin, 46, visits a shop near her home in East Jakarta, Indonesia

Widowed Sarotin, says she could not afford medical treatment in her home village in Bandung, West Java, Indonesia

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

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

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.

Last month an Indonesian man whose body is covered by hundreds of tumours made a final plea for help as the rare condition robs him of his sight.

Slamet, from East Java, is reported to have developed the condition after he had a tumour removed from his waist in 1991.

Slamet's kind-hearted neighbours in Nguntoronadi, Magetan, East Java, have started a Facebook group to try and raise enough money to fund the removal of the tumours.

In November a photo of Vinicio Riva, who also has neurofibromatosis, spread across the world when he was warmly embraced by Pope Francis at one of the pontiff's weekly audiences in St Peter's Square.

In November a photo of Vinicio Riva, who also has neurofibromatosis, spread across the world when he was warmly embraced by Pope Francis at one of the pontiff's weekly audiences in St Peter's Square
image001.png

In November a photo of Vinicio Riva, who also has neurofibromatosis, spread across the world when he was warmly embraced by Pope Francis at one of the pontiff's weekly audiences in St Peter's Square. Both pictured

WHAT IS NEUROFIBROMATOSIS?

Neurofibromatosis has long been associated with the 'Elephant Man,' the name given to Joseph Carey who was severely disfigured. But evidence now suggests he was suffering from another rare syndrome

Neurofibromatosis has long been associated with the 'Elephant Man,' the name given to Joseph Carey Merrick, who was severely disfigured. But evidence now suggests he was suffering from another rare syndrome

Slamet is believed to be suffering from a condition called neurofibromatosis – the name for a number of genetic conditions that cause swellings or lumps.

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.

There are two types of neurofibromatosis and this man is suffering from type one, Dr Anand Saggar, a London-based genetics expert, told MailOnline. 

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

The condition has long been associated with the ‘Elephant Man,’ the name given to Joseph Carey Merrick, who was severely disfigured.

However, in 1986, a new theory emerged that Mr Merrick may actually have had Proteus syndrome, a condition which involves symptoms such as abnormal growth of the bones, skin and head.

The confusion was again compounded in 2001 when it was proposed that he had suffered from a combination of neurofibromatosis type one (NF1) and Proteus syndrome.

However, DNA tests on his hair and bones have proven inconclusive.

Other symptoms of neurofibromatosis type one include flat, light brown spots on the skin.

These harmless marks, also called cafe au lait spots, are common in many people. People who have more than six spots that are bigger than half a centimetre wide should get investigated for NF1. 

NF1 is a condition someone is born with, although some symptoms develop gradually over many years. The severity of the condition can vary considerably from person to person.

People with NH1 are more likely to suffer from learning difficulties and behavioural problems, a type of cancer known as malignant peripheral nerve sheath tumours, which affect around 10 per cent of people with NF1 over their lifetime, vision problems, high blood pressure and a curved spine. 

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