'THEY CALL ME SNAKE GIRL'
Teenager forced to hide away due to rare skin condition that leaves her bleeding if she goes out in sunlight
The 13-year-old suffers from ichthyosis, a rare condition that stops the skin from shedding properly
A TEENAGER is forced to hide away due to a rare skin condition that leaves her bleeding if she goes out in the sun.
Vedika Gupta is cruelly called “snake girl” by her fellow pupils at school and is forced to live a life of isolation.
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The 13-year-old suffers from lamellar ichthyosis, a rare condition that stops the skin from shedding properly.
“I cannot go out in the sun,” she said.
“Whenever I go outside, I get a burning sensation in my skin. My skin peels off and, at times, there is bleeding.
“All I can do is watch children my age play and enjoy their life.”
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Vedika, from Indore in India, spends her time alone studying, painting and watching TV as she doesn’t have any friends.
Her family have taken her to several doctors but none have been able to provide her with a cure.
She has to cover herself in moisturiser several times a day to stop her skin from cracking, flaking and bleeding.
Vedika’s older sister Sunidhi, 20, also suffers from the condition and is so self-conscious about her looks she doesn’t go outside.
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Their aunts also suffer from the genetic condition.
“My elder daughter who also has the same skin disorder keeps herself confined in her room,” said mum Madhuri Gupta.
“She is now a grown woman conscious about her looks and appearance. Hence, she avoids socialising, interacting with people or even coming in front of the camera.”
Desperate for a cure the sisters turned to alternative treatments, which only made their skin worse.
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Then they heard about the plight of Shalini Yadav, an Indian teenager whose lamellar ichthyosis was cured by treatment in Spain.
They are now crowdfunding for the same medication, which doctors say will be available in India.
“All I want is that my daughters don't suffer the same way like me in the future, giving birth to babies with similar disorders, there should be a treatment,” Madhuri said.
“At home, I keep my daughters in comfort, but outside the struggle that they face, I cannot do anything about it.”
Vedika hopes the new treatment will change her life.
MORE ON RARE SKIN CONDITIONS
“Everyone has treated me equally, but yes when I speak to some stranger then I feel a little uncomfortable,” she said.
“If I get help like Shalini got, I can also lead a life of dignity.
“If there is any treatment that helps improve my skin condition by 50 per cent, it will give my confidence a boost.”
You can donate to their cause at their
A PAINFUL CONDITION THAT CAUSES THE SKIN TO HARDEN AND PEEL
Lamellar ichthyosis is a rare genetic skin disorder that affects less than one in 200,000 people.
The skin cells are produced at a normal rate, but they do not separate normally at the surface of the outermost layer of skin and are not shed as quickly as they should be.
The result of this retention is the formation of scales.
Symptoms:
Signs of the condition will be present at birth.
Babies are often covered with a clean membrane and have dark red, tight skin.
Often the eyelids and lips are forced open by the tightness.
Babies also can experience problems with temperature regulation, water loss and secondary infections.
People with lamellar ichthyosis often have trouble closing their eyes completely because of the tightness of the skin around the eyes and eyelids.
In some cases, the skin around the eyes pulls so tightly it causes they eyelids to turn outward exposing the inner red lid and causing continuous irritation.
The dry skin builds up so much that suffers shed skin on a daily basis.
Treatment:
Lamellar ichthyosis is treated topically with skin barrier repair formulas containing ceramides or cholesterol, moisturizers with petrolatum or lanolin.
Severe lamellar ichthyosis can be treated systemically with oral synthetic retinoids.
Retinoids are only used in severe cases of lamellar ichthyosis due to their known bone toxicity and other complications.
There is no known cure, but several clinical studies are active around the world.
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