Mumbai: Learning to live with vitiligo, sans stigma

The first-ever support group for vitiligo patients in the city hopes to stamp out the stigma attached to the condition

Urmila Prabhu (52), who was recently diagnosed with Vitiligo, wanted to get rid of the social isolation and hence, started a support group. Pic/Suresh KarkeraUrmila Prabhu (52), who was recently diagnosed with Vitiligo, wanted to get rid of the social isolation and hence, started a support group. Pic/Suresh Karkera

For the last six months, Urmila Prabhu, a Mumbai-based teacher-turned-storyteller has had a hard time being seen in public. The 52-year-old was recently diagnosed with vitiligo, a medical condition characterised by chalky white spots on the skin. Despite being a painless and non-communicable medical condition caused by the destruction of melanin, the disease is known to cause emotional distress to patients due to the stigma attached to it.

"It sharply contrasts against darker skin tone and makes you stand out. It can be humiliating when people hesitate to sit next to you, refuse to shake hands and stare at you like you don't belong," she says.

Pained by the social isolation, Prabhu has launched Voice of Vitiligo, the first-ever support group on Facebook for people suffering from the disease in the city. "Through the portal, we want to bust myths and raise awareness on the disease. I want people who have it to know that they aren't alone," she says.

Incidentally, India, at 8 per cent, ranks highest in cases of vitiligo. Despite this, there's not a single support group in Mumbai. "This is primarily because people want to remain invisible. You experience so much psychological, social and professional damage that your self esteem takes a severe beating," she explains. She narrates a case where a 23-year-old hotel management student wasn't allowed to appear for an interview at a posh hotel due to this.

"Vitiligo is not a serious disease, medically speaking. It has more social significance than medical importance, as it does not cause any major harm to the body," says Dr Rajesh Shah, who has treated over 7,000 vitiligo patients across the world . According to him, vitiligo is governed by immunological, hormonal and genetic factors and could be triggered by use of chemicals, certain food and stress. "Vitiligo affects Indians and Mexicans more than any other nationalities. This prevalence is likely to be due to their genetic predisposition."

Celebrities with Vitiligo
>> Amitabh Bachchan, actor
>> Graham Norton, TV chat show host £ John Hamm, actor
>> Steve Martin, actor

You are not alone
Today, being World Vitiligo Day, Urmila Prabhu has organised an event at Bandra's QTube Cafe from 10 am to 1 pm. The event will include a talk by Life Force Founder Dr Rajesh Shah, followed by a session where people can share their stories.

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