Gujarat woman battling rare type of skin disease pins hopes on Chennai surgeon

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Nilofar Amin, 28, from Gujarat, has been under self-imposed house arrest for years. That was the only way to spare herself the ridicule she faced whenever she went out. Reason: Amin suffers from a rare skin disease since birth that makes it appear as if the left side of her face has melted off; and, to make matters worse, this has led to development of a tumour there.

She has undergone treatment at several hospitals in Mumbai over the last decade, to no avail. For the first time in a long while, she's finally got some hope of a cure, for which she is on her way to Chennai to undergo skin grafting.

Childhood trauma
Trouble started for Amin when she was six months old - bleeding from the teeth and left side of the face. It was so profuse that it left her disfigured as well as anaemic. The condition results in proliferation of blood vessels, and blood circulates 100 times faster on the left side of her face, making it ooze from the skin, eyes, teeth and lips. Due to this continuous flow, she has nearly lost her lips, and her left eye doesn't open properly anymore.

Amin said, "Different doctors suggested different treatments; one of them was able to diagnose the condition - a severe case of hemangiomas." As the problem worsened, she kept losing more and more blood, as a result of which, her haemoglobin count barely touched 6.

In hiding
Over the last 28 years, she has undergone countless painful surgeries in top city hospitals, including Jaslok and KEM. But these only took a bigger toll on her appearance.

"Whenever I go out, people stare and make fun of me. So, I have stopped going out," she said. Money, too, has been a hurdle, as her father is a fruit seller. The family has started a campaign for her treatment on the crowdfunding website Ketto.com.

A ray of hope
Now, all her hopes rest on Dr Shashi Bhushan, a plastic surgeon at Apollo Hospitals, Chennai. Another patient suffering from the same condition she met at Jaslok Hospital told Amin how the surgeon had healed her completely, with the help of skin grafts. The procedure, however, costs anywhere between Rs 20 lakh and Rs 25 lakh.

"This disease has not only affected my physical health, but also taken a toll on my mental well being," Amin signed off before leaving for Chennai for her surgery, which is scheduled for Monday.

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