Home | National | Woman with neurofibromatosis covered in tumours she cannot afford to treat

Woman with neurofibromatosis covered in tumours she cannot afford to treat

By
Font size: Decrease font Enlarge font
  • 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

0

View
comments

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. 

MOST WATCHED NEWS VIDEOS

MOST READ NEWS

 

  1. Man charged with stealing 43 bikes around Boulder (4.00)

  2. The flying bum! 300ft-long 'airship' unveiled in Britain is the world's longest aircraft (2.00)

  3. Michael Rockefeller WAS eaten by cannibals who kept his bones as souvenirs, claims Carl Hoffman who says his years of research proves that the Dutch covered up 1961 murder in New Guinea (2.00)

  4. Richie Incognito 'admitted to psychiatric unit' after smashing Ferrari (0)

  5. Janet Jackson divorce rumors are untrue (0)

  6. Man, 22, avoids getting speeding ticket after showing police his WINNING LOTTERY TICKET worth $50,000 as he's on his way to collect his winnings (0)

  7. Treaty would mean 'British war with Russia' if Putin's troops intervene in Ukraine (0)

  8. Director Adam McKay says there won't be an 'Anchorman 3' (0)

  9. Joan Rivers flees QVC pre-Oscars bash covered in icing after being caked in the face (0)

  10. DIA displays paintings by prominent Colo. artist (0)

  11. Tammy Wynette's daughters seek to have her name on crypt (0)

  12. 'Big Bang Theory' star SImon Helberg dumped wife then married her (0)

  13. Animal house: Four Boston University students jailed for throwing wild parties after police found over 1,000 BEER CANS cans strewn throughout their frat house (0)

  14. High school student rents a billboard to ask his girlfriend to prom (and she says yes) (0)

  15. Paul Walker's Fast & Furious 7 to resume production in April... just five months after star died is fiery crash (0)

  16. US ambassador urges China to respect human rights (0)

  17. Kerry Kennedy's very close friendship with 90210 hunk Trevor Donovan (0)

  18. Mother-of-four sues for breach of privacy over incessant use of her attractive mugshot across the internet as her lawyer likens her to TOM CRUISE (0)

  19. New Mexico State and Utah Valley brawl between fans and players (0)

  20. ANALYSIS: Same old Democratic playbook won’t beat Gardner (0)

  21. ‘Lock up your husbands’: Scotland man Ian Cuthbert posts raunchy flyer of estranged wife all over town (0)

  22. Niagara Falls comes to a frozen halt AGAIN as subfreezing temperatures freeze the millions of gallons of water that normally flow over the Falls (0)

  23. The Sicilian mafia 'ordered the assassination of Rudolph Giuliani' (0)

  24. Apple takes leaf from LG's book for the iPhone (0)

  25. Noah's ark project in Ky. to move forward (0)

  26. Name a Martian crater for just £3! First 'people's map of Mars' lets anyone leave their mark on the red planet (0)

  27. Glendale police officer guilty in drug case (0)

  28. Hidden camera catches Ind. teen texting while driving (0)

  29. Chris Parente’s Oscars picks; He’ll get it right, or else (0)

  30. Dead Miss. man begins breathing in embalming room, coroner says (0)

  31. McDonald’s worker Heather Levia fired ‘for paying for firefighters’ meals’ (0)

  32. Man needed 80 stitches after being smashed with ICE which fell from skyscraper (0)

  33. Charles of Arabia: Prince stars in the Saudi dance of the swords (0)

  34. The first X-ray of a living cell: Breakthrough lets scientists study cancer in minute detail (0)

  35. Joke that got Jason Payne banned for life from the Hilton Hotel in Basingstoke (0)

  36. Citizens comment on future of Drake power plant (0)

  37. Deaf man Jonathan Meister sues Los Angeles police after being Tasered (0)

  38. Is this Miley's most disturbing stunt ever? (0)

  39. More women are seeking Brazilian butt lifts in New York than the rest COMBINED (0)

  40. Chris Daniels & the Kings to play 30th anniversary shows (0)

  41. Daphne Oz gives birth to first child, a daughter (0)

  42. Baby is found to have fully-formed teeth growing inside his BRAIN due to rare tumour (0)

  43. Couple charged with kidnapping in the disappearance of husband's lover, 20, two months after she vanished (0)

  44. Obama White House chose NOT to block treasure trove of 1990s-era documents set for release Friday that could doom Hillary Clinton (0)

  45. Son, 14, of oil millionaire is 'murdered by man after being groomed through computer games' (0)

  46. Rihanna accused of plagiarism ... again (0)

  47. Kitten found frozen solid in a block of ice and stuck to a road is RESCUED (0)

  48. New evidence suggests Texas executed innocent man accused of killing his three daughters in house fire (0)

  49. Jada Pinkett Smith hopes to fit in Oscars dress after weight gain (0)

  50. Toronto Zoo polar bear cub tumbles over snow hills to greet public for first time (0)

  • Email to a friend Email to a friend
  • Print version Print version
  • Plain text Plain text

Rate this article

0

Photo Galleries

PHOTOS: Plastic Surgery Celebrity Awkward family photos 
 
UPDATED: Faces of Meth PHOTOS: Celebrities all a-Twitter

More galleries ››