By Mark McConville
THIS TRAGIC teenager, known locally as Snake Girl, is forced to live in isolation after being stricken with a condition that causes her skin to bleed upon contact with sunlight.
Images show the 13-year-old girl posing for the camera as she bashfully displays the skin disorder which is aggravated when she goes into the sun.
In a short clip the girl explained the affect sunlight has on her skin while also recalling the problems she faced at school. Her parents are raising money in a desperate bid to treat her condition.
Vedika Gupta, from Indore, India, suffers from Ichthyosis, a genetic disorder that affects just one in 200,000 people. The condition has confined her to her room and forced her to lead a life of isolation.
“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. I often ask myself as to why I have been subjected to this kind of punishment by the god. What sin have I committed to suffer like this.”
Vedika spends her time studying, painting and watching tv as she doesn’t have any playmates in the neighbourhood in Indore, Madhya Pradesh.
Her family has seen several doctors but none of them have been able to provide a cure for it. In the absence of any prescribed medicine or treatment plan, Vedika is left with no option but to resort to applying generic body lotion to keep her skin moist and stop it from flaking off.
She has to apply the lotion multiple times in a day — after taking a shower or washing her hands and feet — in order to prevent the skin drying up and bleeding.
The Guptas have seen doctors in advanced facilities in Mumbai and Delhi, but none of them have been able to offer a cure either.
In the Gupta family, Vedika is not the only one suffering from this disorder as her elder sister Sunidhi is also afflicted with the same skin disorder.
The 20-year-old is so conscious about her looks that she is unable to face the world and has confined herself insider her room.
Sunidhi has become so introvert that she doesn’t attend social functions or events at home to avoid being grilled by people for her looks and appearance.
However, the sisters are not the first ones to get afflicted with this disease in their family. Their aunts (father’s sisters) were also born with scaly and patched skin and lead a life of isolation and rejection.
“My elder daughter who also has the same skin disorder keeps herself confined in her room,” said mother 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.”
As modern medical treatment couldn’t offer a cure they started homoeopathic medication of the girls, but that too didn’t help.
“Instead, it aggravated the condition,” added the 45-year-old mother of two.
“It became so bad that the girls would have constant itching and occasional bleeding from the skin cracks. We had given up hope, but it was then we learnt about the story of Shalini Yadav who suffered from the same disease as our daughters.
“She was taken to Spain and treated by doctors there. We have been told that the doctors have shared the formula of the medicines with an Indian Pharma company and that the medicine will be available in India, too.
“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.
“At home, I keep my daughters in comfort, but outside the struggle that they face, I cannot do anything about it.”
While Sunidhi has resigned to her fate, Vedika is hopeful that there will light in the end of the tunnel.
“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. My eyes keep welling up and shed tears just like that.
“If there is any treatment that helps improve my skin condition by 50%, it will give my confidence a boost.”
A girl named Shalini from Chhattarpur, Madhya Pradesh India also had a similar medical condition where her skin peeled off like a snake.
Shalini had to smear herself with lotion every three hours to prevent the skin from drying out. She was treated for free at Regional University Hospital and Virgen de la Victoria of Malaga after she got help from India-based press agency Newslions, run by Sanjay Pandey who had highlighted her plight.
The doctors in Spain who had treated Shalini have now volunteered to share the medicine’s formula which would help the sisters get their treatment in India itself and they do not have to go abroad for their treatment.
“I have spoken with the father of Shalini Yadav,” said Sunidhi and Vedika’s father Sanjay Gupta, a small time businessman who somehow manages to make the ends meet.
“I am now hopeful that finally there will be a proper treatment of my daughters. I will do whatever I can in my capacity.
“I am told that Shalini’s treatment was an expensive affair and I am afraid I don’t have that much of money to fund the treatment. Hence, I request all the kind souls out there to come forward and pitch in for the treatment of my daughters.”
A crowdfunding campaign has been set up in Milaap, India’s version of GOFundMe, to raise funds for this treatment.
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