Founder: Beyond Vitiligo
Although its precise cause is unknown, vitiligo causes pale regions in the skin in which cells that produce pigment are mysteriously destroyed. One in 100 of us have it but for sufferers like Gaone Tlhong, it’s society’s skin-deep reactions that make vitiligo the fight of a lifetime.
Tlhong has borne the characteristic white patches since age four. Initially, as they spread along her arms, the name-calling worsened and she withdrew from the world in embarrassment.
“It hurt when I noticed my skin changing,” she recalls. “I isolated myself from my community because I didn’t look like the others.” Battling through the marginalisation, she found the strength to turn her emotional decline around. In 2009 she started the non-profit organisation Beyond Vitiligo and set about dismantling the superstition and stigma that had weighed her down.
At the core of Tlhong’s work is to educate people to change ingrained traditional beliefs about vitiligo. She cites one African belief that vitiligo is a mark of a calling to be a traditional healer. In Tswana there is even a saying — mollo wa badimo — describing the white spots as burns from the ancestors as punishment for wrongdoing. But as far afield as India, there is a cultural bar on female sufferers marrying.
Working weekends and on lunch breaks from her job as a billing clerk, Tlhong and her expanding team are making slow progress towards what she calls “vindication” for fellow sufferers. Short on funding, they share their stories wherever they can, use social media like Twitter to publicise their cause, and even approach sufferers in malls and on the street to offer advice and invite them to join the movement.
Their latest mission is to grow June 25 from a day when members gather in mutual support into World Vitiligo Day.
— Ian Macleod