A few years ago, the globally iconic TIME magazine carried a photo-essay on the disturbing trend surrounding Vitiligo in India. TIME was then widely derided by many for what was labelled an ‘unbalanced’ and ‘biased’ article. The photographer and brain behind the project, Chiara Goia, was severely trolled online.

What Goia had discovered and showcased was, in fact, the tip of the iceberg. There are rising cases of social stigma against Vitiligo even in the most urban cities, and the infrastructure for Vitiligo treatment in India is at an all-time low.

This was recently exposed by a path-breaking study documented in the Indian Journal of Dermatology. Two researchers highlighted how many sufferers had no one to listen to them, and how depression crept upon many Vitiligo-afflicted.

What is Vitiligo and why the stigma?

Vitiligo is a genetic condition where the skin loses its melanin levels and becomes discoloured. There might be patches of white skin on the upper torso as well. Studies suggest that India has the highest number of people with Vitiligo, with 1% of the global population suffering from it.

There are many quacks who profess to have the right Vitiligo remedies which will remove the unsightly marks off a sufferer’s body. However, Vitiligo has no known treatment. All modern medicine can do is to halt the spread of the white patches.

The stigma starts with lack of education and certain preconceived notions. Upon Vitiligo diagnosis, studies suggest that the afflicted and his or her family are immediately perceived to be ‘infectious’, ‘impure’, and ‘other-worldly.’

Experts suggest this is a latent form of ‘White Man Syndrome’, which is common in the subcontinent. Vitiligo in India elicits the same response but in reverse; that the sufferer is an Indian but with an alien skin colour.

This view was taken by the Dermatological Society of India too and has since been red-flagged by researchers.

Given that Vitiligo treatment in India is already in a veritable quagmire, the greatest challenge is not merely medical but also social. The second part arguably demands greater attention.

The way ahead

Social and community medicine gurus have devised a 4-pronged approach to tackle these notions regarding Vitiligo in India.

• Take the Vitiligo campaign to the grassroots by mass communication methods. The government can mobilise endless resources for this.
• Teach the population that Vitiligo remedies do exist but to an extent only. Eliminate quacks from the system.
• Assure the afflicted every support including financial aids.
• Start online viral campaigns focused on one idea: that Vitiligo is non-contagious.

How much these social campaigns will add up to remains to be seen. However, given time, self-help groups and volunteers fighting for better Vitiligo treatment in India will probably disprove TIME magazine.