World Vitiligo Day – June 25When influencer Sameeha Mariam was diagnosed with segmental vitiligo three years ago, she decided that instead of hiding her patches she was going to flaunt them. “I’ve always wanted a tattoo. And I see vitiligo as nature’s tattoo.”Sameeha created a reel on her vitiligo by painting a butterfly on her patches. “Because that’s what they look like to me,” she says. The video garnered more than two million views on Instagram with scores commenting about how beautiful it looked. “People with vitiligo message me how they want to try something like this,” says the ***-year-old who goes by the handle @thatpotatoface5.But it wasn’t always like this. For decades, people with vitiligo in Tamil Nadu battled discrimination, ostracised at workplaces and not allowed into educational institutions, because of the misconception that vitiligo was contagious.Nithya G, for instance, who has vitiligo, says often, despite a company’s public emphasis on inclusion, workplace interactions tell a different story. “I always felt ostracised by my colleagues. I would sit alone during lunches; no one would talk to me or come close to me. It became draining. I’ve moved several jobs trying to fit in,” says the 26-year-old.“It’s a struggle to create awareness,” says K Umapathy, secretary of Leucoderma Awareness Movement India (LAMI), who has been advocating for the rights of people with vitiligo since 1996. “We have battled cases where students have been denied admission to schools and colleges because of the condition. In 2015, a college in Virudhunagar refused to admit a student, who even had a doctor’s note that the condition was not contagious. They threw the paper at the student and refused to admit him,” says Umapathy.After LAMI filed a writ petition to the Madurai high court, the college agreed to admit the student. “That’s when a strong directive came into place. Colleges that denied admission to a student would lose their NAAC recognition and wouldn’t be allowed to function. This enforcement, in a way, drove more colleges to accept students and awareness was raised on the matter,” says Umapathy.In Dec 2010, chief minister M Karunanidhi issued a govt order changing the Tamil name of vitiligo from ‘venkushtam’ (white leprosy) to ‘venpulli’ (white spots), which helped change the way the condition was perceived.But while awareness has improved, misconceptions still exist. Dr S Murugusundaram, founder and medical director of Chennai Skin Foundation, says, he uses the term ‘depigmentation’ when he gives his diagnosis to patients. “Vitiligo un-nerves them. Some think it is another form of leprosy and naturally assume it is contagious,” he says. “It is a struggle to convince them that it is nothing but an autoimmune condition caused when melanocytes (melanin-producing cells) are destroyed by the immune system and fail to distribute colour to the skin.” In some, he says, the condition can be triggered or worsened by severe sunburns, skin trauma (cuts, friction), exposure to harsh industrial chemicals and severe emotional stress.“Decades ago, there were myths about how eating chicken and curd together, or eating too much tamarind, caused vitiligo,” he says.While there is more awareness, Umapathy says there is still a long way to go, especially when it comes to marriage. “People are so ignorant that they think if the parent has the condition, the girl might also develop it. We’ve seen marriage proposals break because of this,” he says. In ***(the eyar201**).LAMI began organising annual mass weddings for people with the condition. So far, they have conducted more than 500 weddings. “We keep handling cases where the wife develops vitiligo after marriage, and the husband abandons her and the child. Some men have even moved overseas alone to avoid being in contact with their wives,” he adds.LAMI campaigns in schools and colleges across the state to teach students about the condition. On June 25, they are hosting a mass painting event at Madurai American College, where more than 2,000 students will do art themed on the subject. The organisation also has an ongoing campaign against a colonial-era military regulation that bars people with vitiligo from serving in the armed forces, including in medical roles such as doctors and nurses.It is estimated that 37 lakh people in Tamil Nadu live with the condition. World Vitiligo Day is celebrated on June 25 to honour pop icon Michael Jackson, who publicly lived with the condition and died on the date in 2009
