A woman’s skin is her pride and joy. For many, it is the difference between confidence and low self-esteem. So imagine having to live most of your life with a rare skin disease that no medicine so far has been able to cure or conceal. It takes a special journey through the inner struggle of acceptance to finally reach that destination where confidence, recognition and apathy await.
Afrikan Goddess sat with the founder of Beyond Vitiligo, Gaone Petronella Tlhong, via Skype, to hear her story of survival in a world of depression, and her journey to eventual acceptance of who she is on the inside and just on the outside. She spoke about her challenges growing up living with vitiligo. She also spoke about her dreams for the future of the organization, and of her resolve to educate the masses about the disease that once threatened to cast her into eternal oblivion.
“It gets to a point in one’s life when you just have to accept that this is the way life is going to be for you. You can either run or hide, or you can fight to change the way people perceive you and your life.” Gaone decided to do the latter when she boldly began a campaign movement in 2009 called Beyond Vitiligo. Through the organization she has embarked on an effort to create awareness of vitiligo, to create support for vitiligians, to viducate (educate vitiligo style) the masses about vitiligo, and to create acceptance both among vitiligo patients and their families, as well as the community at large.
This month’s feature is a testament to what can happen when ordinary people band together and fight to make their voices heard. It is evidence of the difference one person can make simply by accepting and then educating and encouraging others also to accept. Many may have heard of vitiligo before, but never got a chance to be educated about its rare existence because we were made to believe that it was something a sequined white hand-glove and extensive bleaching could hide. But where one man failed to use his celebrity status to educate, one very young (26 years-old) woman has chosen to fight the battle for the voiceless. And while there may be some valid reasons why Michael Jackson chose to hide behind sequined gloves, this much is clear; he was not half as brave as our November goddess. She is a force to be reckoned with and her voice is making a difference in her community. She has taken something that once kept her in silence; something men once used as a manipulative tool; something which kept her emotionally and physically shackled and at the mercy of limitless taunts and name-calling; something she says made her the target of stares; and she has turned it around for the good of all. It takes a very special lady to do this.
Gaone Petronella Tihong was four years-old when she first showed signs of vitiligo. Born in South African to a Botswana father and a South African mother, Gaone recognizes South Africa as home, and has become the voice of the vitiligo community in South Africa. When Gaone was 14, her vitiligo mysteriously disappeared only to reappear when she was in her second year at the University. The experience was traumatic for her because the stigma attached to the disease in South Africa is rooted in superstition. Many believe the disease is a curse or punishment handed down to scar generation after generation. The stigma causes many to live in isolation and shame. Recalling names like “twincolor,” “chameleon,” and “black and white,” Gaone is no stranger to the taunts of both children and adults alike. Beyond Vitiligo is a call to the community to live beyond the disease and to encourage individuals to take vitiligo for exactly what it is; a disease with natural causes, and not a curse.
Vitiligo is a skin disease characterized by irregular white patches or blotches on skin. The patches which can appear on any part of the body result in the destruction of the skin’s pigment producing cells called melanocytes. There is currently no cure for vitiligo.
In the two years since its founding, vitiligo has made a positive impact in so many ways. Most notably, the level of awareness and acceptance of the disease just like any other has increased. Vitiligo patients living in South Africa are now free to live normal lives devoid of the stigma that was once associated with the disease. Beyond Vitiligo, under the able leadership of the 26 year-old Gaone, has transformed the thinking of many and has become the source of information for people looking to learn more about the disease.
According to Gaone, “church leaders and senior people in the community have embraced BV” and are encouraging Beyond Vitiligo to continue with its awareness campaign.
And that’s exactly what Gaone intends to keep on doing. However, she has even bigger dreams for organization she started as a way to inform others about her own affliction with vitiligo. She hopes to take Beyond Vitiligo “beyond the South African border” and across the continent and beyond. Beyond Vitiligo is already sharing ideas with VITSAF, an organization for vitiligo based in Nigeria. She also hopes to get the media as involved, in the campaign, as possible to help carry the message; even as she continues to work hand-in-hand with the South African Department of Social Development and Health, lobbying for research to find a cure for vitiligo.
Gaone believes it is important for children to learn early on to accept their condition and to learn to live with it in confidence. This is why she dreams to reach as many children as she possibly can in the next five years. She also believes a day set aside (June 25 in memory of Michael Jackson who also suffered from vitiligo) as World Vitiligo Day would help spread awareness and inform the masses of the need to successfully integrate vitiligo sufferers into society and to try and find a cure.
With the continued growth of the organization, and continued outreach and support, Beyond Vitiligo is certain to reach its goals. The change is already evident throughout South Africa and hopefully, soon, across its borders.
Gaone believes, as her mother has said over and over, that “The Lord will never give you something you’re not strong enough for.” Obviously her mother was right and continues to be right because Gaone has defeated her affliction and taken control over her own life. She lives in Orange Farm in the Gauteng Province of South Africa, and holds a degree in Business Administration from the CIDA City Campus.