An autoimmune disease that leads patches of skin to lose their pigment shows first in body parts exposed to the sun. It gradually spreads making individuals clearly distinct and pushes them to deliberate discomfort. Though no known cure so far, it is not contagious as well. But that does not prevent healthy people from making them the target of ridicule. Umar khurshid talks to a number of individuals to understand the crisis they face in society and at home
Khushboo Jan 16, a tenth standard student from Cheeni Chowk in Islamabad town has not moved out of her home for last two years. Reason: she has developed white spots on her face and neck.
In 2010, the teenager was taken to a doctor after her mother found a pale white patch on her neck. They thought it was some allergy. It eventually turned out to be vitiligo which rapidly occupied half of her body.
“I was very afraid if it spreads beyond what it already had occupied what will happen to her,” Haleema, her mother, said. “How will people react to her appearance so we kept her in treatment at home.”
Even Khushboo had detected the problems she had started facing. In the bus, commuters were avoiding the seat next to her probably thinking it’s contagious.
After initial crisis, Khushboo stopped thinking about what others thought of her. She still felt low in self-esteem and security.
Later, when her half of the face was wrapped with vitiligo she started to hide with a scarf, even used camouflages to hide her real face. As she grew older, thoughts about her future started messing her inside.
Gradually Khushboo landed in depression. Then other question cropped up: “Given the society we live in, I am afraid that people should not blame me for what happened to me.”
Aqib Dar 26 is a resident of Mattan, a daily wager in a shopping complex in the main town. Vitiligo attacked him when he was barely 17. It started with a tiny white spot near his left eye and later spread over his face. Aqib’s vitiligo appears as if he has been burned. At the workplace, the customers, especially females started gazing at him and then started asking strange questions: “How you got it? Why you got it?” He quit his job.
A highly conscious person, Aqib covers himself with high neck clothes whenever he goes out. His body has 90 percent spots affected and he is unable to wear normal clothes.
“It remains dormant for years and then, all of a sudden, it spread like wildfire over my body one winter,” Aqib said. His face is normal but says he hates looking at himself in the mirror.
After a struggle of years, Aqib says he found a faith healer who helped him.
Owais Ahmed 21, a graduate student from Pampore has this problem since he was 11. It has been his decade-long battle with these patches. “I know it is not life-threatening and my entire body functions normally,” Owais said. “But people give a lot of importance to the looks.”
It was only in the tenth class when Owais began wondering if there was any way of curing it. Since then, he has undergone different treatments. In school, he was bullied for his patches and, at the point of time, forcing him to resort to skin make-up. He says he still avoids eye contact with people. “There were instances when I locked inside a room and cried,” Owais said. “I still am a slave to the peoples’ judgements.”
People have this problem are usually being prescribed to stay out from fatty and sour foods. There is no record of a perfect cure but globally various methods are used to manage it. Use of immune mediators is the first line of treatment. Photo-therapy and skin pigmentation – using drugs on unaffected patches to get an even colour, are other commonly used management strategies. By and large, the face is easily being pushed back to normal using de-pigmentation, the hands and toes resist such treatment. Staying away from the sun is a lifelong caution. Cosmetic camouflage is one way-out to manage it as world’s famous pop singer Michael Jackson was reportedly resorting to.
Bilal Ahmed, a postgraduate of Punjab University, lives in Seer. He was around seven years of age when he found a patch of his neck. Doctors gave him creams and bath soaps but they were ineffective. “It is just something I have got to live with,” he said.
Bilal social trauma and taunts have made him a humble soul who appreciates things that otherwise are being taken for granted, “Vitiligo has opened my eyes, – taught me not to judge a book by its cover,” Bilal said.
His schooling was smooth but hell broke loose in the secondary school when a new bunch of peers did not just take his unusual skin for granted. They started asking uncomfortable questions, instead: Why you got it? Is it infectious?
Born shy, Bilal used to get embarrassed by his knees and elbow. This led him to give up his favourite sport, swimming.
His worries are now linked to his marriage. He thinks over it but lacks an answer. “I realise that it is part of me whether I want it to be or not,” Bilal said. “I cannot change it so ultimately I had to embrace it and learn to love it.”
Ghulam Hassan 45, a fruit vendor lives on KP Road. He lived with vitiligo since childhood. His ninety percent body has white patches. “My arms, neck and shoulders appear as if I have been burned and my splotchy light and dark spots honestly look awful,” admits Hassan.
Hassan is still a spinster. In 2010, he married a nonlocal, literally purchasing her for Rs 20,000. After a week later, the bride deserted him.
Sharing his two-story house with his brother, who lives separately in one part of his house, Hassan lives in a literal solitude. He admits people avoid sitting next to him, not eating food with him. He admits he hates the mirror.
Tasleema 28 has recently finished her post graduation through IGNOU. She lives in Kehribal village and is fighting vitiligo for almost a decade now.
Her family rushed her to the doctors after noticing a small white spot on her face. It didn’t bother me at that time but a few weeks later it grew all over my face,” Tasleema said. She had many anecdotes of indirect abuse. After a doctor literally said he cannot do anything, Tasleema started visiting a faith healer. She says she sees rapid change now.