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Rare Condition Causes Girl To Bleed Spontaneously From Her Pores

Rare Condition Causes Girl To Bleed Spontaneously From Her Pores

Twinkle Dwivedi has a rare condition where she bleeds spontaneously from any part of her body.

Twinkle Dwivedi, 13, developed a strange disorder last year which causes her to lose blood through her skin without being cut or scratched. Her condition can become so bad; she sometimes wakes up with her entire body covered in dried blood.

She has even undergone transfusions after pints of it seeped through her eyes, nose, hairline, neck and the soles of her feet.

Twinkle Dwivedi has a rare condition where she bleeds spontaneously from any part of her body

Superstitious and religious villagers near her home in Uttar Pradesh, India, believe she must be cursed and shout cruel things in the street.

Her family has tried everything to seek help for their daughter. “I am desperate to help my daughter,” said her mother Nandani Diwedi, 42.

“We are not superstitious people but we became so desperate,,
“We’ve been to temples, mosques, churches and sufi saints, but nothing has cured her.”

Indian medics believe her condition is an extreme version of a rare blood platelet disorder for which they cannot find a cure.

However, a British specialist believes Twinkle may have a different clotting disorder, for which treatment will be possible.

Last year, Twinkle was a normal 12-year-old who enjoyed school, painting and playing with her friends – but then she suddenly started bleeding between five and 20 times a day.

“I was so scared,” she said.

“It didn’t hurt. But it was scary and messy, and my friends thought it was disgusting,
“My school blouse went all red. No-one would come near me or play with me,
“I used to cry nearly every time it happened. But now I just keep quiet.”

Twinkle was then thrown out of school whilst others refused to teach her because of her strange condition. She must now study at home and rarely sees other children. Her mother said,

“I am very worried about her. She is very weak and pale from the blood loss,
“She is very isolated and depressed. She wants to get better so she can go back to school,
“I now believe doctors in India are incompetent. I don’t think they can help her.”

Twinkles bleeding first began from her mouth in July 2007. Her parents took her to a GP who diagnosed the case as a common ulcer.

But a few weeks later, the bleeding began seeping from her nose, eyes, feet and hairline.
Twinkle’s parents took her to see dozens of different doctors who could not find a reason for her blood loss. Her dad Aditya Kumar Diewdi, 47, a railway worker, said:

“They told us they had never seen a case like this before,
“One doctor even accused us of making it up. Why on earth would we do that?”

Twinkle DwivediFinally doctors at the All India Institute of Medical Sciences in Delhi decided she has Type 2 Platelet Disorder, a rare condition where blood is dangerously low in clotting particles.

They say her blood is watery and has the color of a light red wine – but they cannot find a treatment to make it thicker.

However, a blood specialist in Britain came up with a different diagnosis and believes there may be hope.

Consultant hematologist Dr Drew Provan, of Barts Hospital in London, said:

“She may have Type II von Willebrand disease and she should see a coagulation doctor for treatment.”

He believes her condition is not related to the number of clotting particles, but something called the von Willebrand factor, which helps platelets stick to blood vessels and blood to clot.

She has already undergone several blood transfusions and it is feared she may one day lose too much blood too quickly. If diagnosis can’t be found soon, she will continue growing weaker.

“When I bleed from the head, my head feels very heavy,” says Twinkle.

“When my eyes bleed they go really red and sore. It also hurts when I wash it after bleeding.”

The eldest of her three sisters Parul, 21, said, “We pray every day that the doctors will find a cure for my sister.”

Her mum added: “My family will do anything we can to help her be healthy again.”

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