November 3, 2008
Twinkle Dwivedi, 13, has a disorder which means she loses blood through her skin without being cut or scratched. The teenager has had to undergo transfusions after pints of it seeped through her eyes, nose, hairline, neck and the soles of her feet.
The teenager’s condition developed when she was 12 when she suddenly started bleeding between five and 20 times a day. Sometimes her condition is so bad she wakes up with her entire body covered in dried blood.
“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. It was scary and messy. My school blouse went all red. No-one would come near me or play with me,” she said. “I used to cry nearly every time it happened. But now I just keep quiet.”
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 without success.
Medics in India now believe the youngster’s condition is an extreme version of a rare blood platelet disorder for which they cannot find a cure. The doctors at the All India Institute of Medical Sciences in Delhi believe she has Type 2 Platelet Disorder, a 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 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. “She may have Type II von Willebrand disease and she should see a coagulation doctor for treatment,” said Dr Drew Provan, the Haematologist Consultant of Barts Hospital in London. 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. However, Twinkle’s family, from Uttar Pradesh in India, do not have the funds for private treatment.
Unless an actual diagnosis can be made 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.
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.