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La fille indienne Twinkle Dwivedi (13 ans) souffre d'une maladie très rare et très pénible : des parties de son corps (tête, yeux, pieds...etc) saignent sans qu'elles ne se coupent, et les saignements s'accompagnent de douleurs lorsqu'elle doit se laver.
Les médecins indiens pensent qu'elle souffre d'une forme extrême d'une anomalie qui touche les plaquettes (cellule sanguine sans noyau qui joue un rôle dans la coagulation).
La pauvre Twinkle qui vit au rythme des transfusions sanguines, ne peut même plus aller à l'école tant elle est moquée par les élèves et la population intolérante qui l'accusent d'être "maudite". Elle étudie chez elle.
Mais il y a un espoir : un médecin britannique pense qu'il est possible de traiter sa maladie. Il ne reste plus qu'à trouver les fonds pour la transférer en Angleterre.
The girl who bleeds without being cut baffles doctors
A girl who spontaneously bleeds from her pores has baffled doctors.
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.
Sometimes her condition is so bad she wakes up with her entire body covered in dried blood.
Her frantic family have sought help from numerous doctors as well as preachers without success.
'I am desperate to help my daughter,' said her mum 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.'
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.
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.
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.
'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 teenager's condition developed when she was 12 when she suddenly started bleeding between five and 20 times a day.
'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.
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.'
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.'
source : The Dailymail
Twinkle avec sa soeur Shefali et sa mère Nandimi.
Les médecins indiens pensent qu'elle souffre d'une forme extrême d'une anomalie qui touche les plaquettes (cellule sanguine sans noyau qui joue un rôle dans la coagulation).
La pauvre Twinkle qui vit au rythme des transfusions sanguines, ne peut même plus aller à l'école tant elle est moquée par les élèves et la population intolérante qui l'accusent d'être "maudite". Elle étudie chez elle.
Mais il y a un espoir : un médecin britannique pense qu'il est possible de traiter sa maladie. Il ne reste plus qu'à trouver les fonds pour la transférer en Angleterre.
The girl who bleeds without being cut baffles doctors
A girl who spontaneously bleeds from her pores has baffled doctors.
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.
Sometimes her condition is so bad she wakes up with her entire body covered in dried blood.
Her frantic family have sought help from numerous doctors as well as preachers without success.
'I am desperate to help my daughter,' said her mum 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.'
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.
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.
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.
'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 teenager's condition developed when she was 12 when she suddenly started bleeding between five and 20 times a day.
'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.
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.'
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.'
source : The Dailymail
Twinkle avec sa soeur Shefali et sa mère Nandimi.
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