Chennai - In a small, old room at the top of a rickety staircase K Umapathy is trying to make hundreds of people's dreams come true. He wants to find people with vitiligo, a condition that destroys the skin's pigmentation, true love.
Umapathy, whose own complexion is a testament to the starkness of vitiligo, also called leucoderma, stands behind his desk that is hidden by a thick layer of profiles belonging to marriage candidates. Each profile includes a one-page questionnaire, completed in either English or Tamil, and a photograph, neatly stapled to a corner of the page.
Most of the female candidates are dressed in saris in hues of bright red and blue. At first, the vivacious tones of their outfits disguise the extent of their need. The men, mostly expressionless, are dressed in smart outfits. The skin condition that they say has prevented them from finding a companion is visible on the parts of their bodies that remain uncovered: Distinct, random white patches mark their arms, chests, necks and faces.
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Umapathy offers a brief description of every profile. His voice is heavy with disappointment as he lists the credentials of each candidate. "This guy is a professor," he says. "And she is a teacher. We have lots of teachers," Umapathy adds.
All the potential brides and grooms are important members of their communities. But unfortunately, they also have vitiligo, a highly stigmatised health condition that often relegates victims to India's social and cultural wilderness.
In India, marriage is one of the most important events of adulthood. It marks the bonding of families, the growth of communities, and importantly, an individuals standing in society. But for generations, people with vitiligo have been left out of the country's traditional matrimonial market.
According to the Leucoderma Awareness Movement – India, a non-governmental organisation that tries to help people with vitiligo, people who have the condition often just give up on marriage.
People think that if they marry someone with vitiligo their children will get it in the future, laments Umapathy.
"If any one of your family members has vitiligo all marriages in the family are at stake," he says. "This is the problem. This is the stigma attached to this condition."
To help the people society has rejected, the organisation hosts "swayamvaram" or match-making sessions. Since January last year it has helped connect 350 men and women with the skin condition. Dozens of marriages have taken place because of this grassroots initiative.
Accurate data on how many Indians have vitiligo is hard to find. Umapathy says approximately four percent of the country's total population has it but Dr GR Ratnavel, a Chennai-based cosmetologist, puts the figure as high as
12 percent in some communities. By either of these estimates, millions of people across India not only suffer from this psychologically traumatic skin condition but also face the possibility of living life alone.
India's traditional marriage market may have perpetuated myths about vitiligo but online match-making services could offer victims and their families the privacy and confidence they need to find the perfect person that can look beyond the white patches.
Shaadi.com is the world's largest matrimonial website catering to South Asians. It has more than 21 million members and the company estimates that up to two percent of its clients have vitiligo.
Despite this, Gourav Rakshit, the firm's Chief Operating Officer, told Al Jazeera that it does not have a distinct category for people who suffer from the skin disorder.
While most of Shaadi.com's clients advertise the condition in their personal profiles, Rakshit insists it is not a reason for the company to isolate potential brides or grooms. He stresses that when it comes to health problems, vitiligo is not in the same league as HIV, an illness with severe consequences for a prospective partner.
"Our sense is that it is not something that is likely to make or break a happy marriage. We don't specifically call out vitiligo as a condition because we do not want to encourage people to discriminate against it," says Rakshit. "It is part of the discovery process."
When asked why the online match-making outlook differs so substantially to the traditional matrimonial market, Rakshit pointed out that unlike the centuries old first-impressions format, online dating is an evolutionary process in which over time, a whole host of factors weigh significantly in a client's decision-making process. He optimistically adds that online match-making allows the belief that there is someone out there for everyone to prevail.
In recent years the Internet has emerged as an important match-making tool in India, particularly for tech-savvy people from the country's middle and upper classes. But medical treatment is still seen as the best way to ensure that the condition does not stop sufferers from living life to the fullest.
Dr Ratnavel treats at least 200 vitiligo patients every week using various procedures like skin grafts and melanocyte culture, a process by which skin is cultured in a lab and transplanted onto the body.
People line the hallways of Government Stanley Hospital in Chennai to see him. On a wall in the dimly light waiting area a big board with before and after pictures of vitiligo patients serves as a grim reminder of the challenges that so many of those waiting face and the hope that endures in the room behind it.
Vitiligo is often described as incurable, a problem of the skin that strikes randomly and a condition that is difficult to predict, let alone treat. But Dr Ratnavel disagrees. He says 60 to 70 percent of cases in India can be treated medically.
"If the patient comes out fast, the cure is fast," for the lucky 70 percent, he said. "The remaining 30 percent, even if they come fast, even if it is an early diagnosis, it is not curable with medicine."
However some people insist that vitiligo is not just a medical problem but a social one too. According to Rajana Kumari, the Director of the Centre for Social Research, the negative attitude towards people who do not have a perfect, fair complexion is rooted in Indian history.
"This is a very colonial complex. Because the masters were fair people thought that fair meant good looking and smarter," Kumari told Al Jazeera.
When asked what impact this perspective has on the plight of millions of Indians who suffer from vitiligo Kumari adds that it is very tough and very difficult.
"You create a framework where everybody has to fit in. Fairness where India is concerned is unacceptable," she says. "It is totally wrong."
While millions of Indians look for effective treatments, and maybe even a cure, the harsh social and cultural realities that accompany vitiligo suggest that what is really needed is better awareness and acceptance. This, if anything, may go some way to not only dispel largely baseless misconceptions but also make it easier for those burdened with the condition to find someone to love.
Source: Al Jazeera