|
#1
●
11-27-2008, 10:17 AM
| ||||||||
 ★ ★ GENERAL ★ ★ Poster Rank:42 male Join Date: Oct 2006 Posts: 34,464
Contributions: 35
Mentioned: 2169 Post(s) Quoted: 20754 Post(s)
| ||||||||
|
Twinkle Dwivedi
Twinkle Dwivedi (13) bleeds spontaneously from any part of her body. The symptoms began when she was 12. Twinkle who has 3 sisters, lives with her family in the Alambagh area of Lucknow city, Uttar Pradesh, India. While the bleeding usually occurs on a daily basis there are sometimes periods of several days with no bleeding. The bleeding began in the mouth and progressed to the nose, within the hairline and most recently the eyes. But bleeding has occurred from most areas of the body - even the soles of the feet. There does not seem to be any obvious trigger for the bleeding episodes The family has no previous history of blood disorders.  ·
__________________ Support the site and our continued existance by upgrading to a Green Name |
|
#3
●
11-27-2008, 12:37 PM
| ||||||||
 My Rank: CORPORAL Poster Rank:1579 Female Join Date: Sep 2008 Posts: 352 Mentioned: 0 Post(s) Quoted: 2 Post(s)
| ||||||||
|
Re: Twinkle Dwivedi
Telegraph.co.uk writes: Twinkle Dwivedi, 13, has a strange disorder which means she loses blood through her skin without being cut or scratched. She has even undergone transfusions after pints of it seeped through her eyes, nose, hairline, neck and the soles of her feet. Sometimes her condition is so bad she wakes up with her entire body covered in dried blood. Villagers near her home in Uttar Pradesh, India, believe she must be cursed and shout cruel things in the street. Her frantic family have sought help from numerous doctors as well as preachers from many different religions without success. "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 now believe her condition is an extreme version of a rare blood platelet disorder for which they cannot find a cure. However, a ray of hope has been offered by a British specialist, who 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 thrown out of one school and another refused to teach her because of her strange condition. Now she studies 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." The first time the bleeding happened from Twinkle's mouth in July 2007, her parents took her to a GP who suggested a common ulcer. But then, a few weeks later, the bleeding also started 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?" Finally 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 colour 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 haematologist 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. But Twinkle's family is poor and unless an actual diagnosis can be found soon, she will continue growing weaker. She has already undergone several blood transfusions and it is feared she may one day lose too much blood too quickly. "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." Twinkle has thee older sisters who are also extremely concerned for her future. Her eldest sister Parul, 21, who works in a Delhi call centre 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." |
