Gaone Tlhong ready to bust myths about vitiligo in black communities
Johannesburg - Gaone Tlhong is the founder of Beyond Vitiligo, a vitiligo awareness organisation. She will be hosting a webinar with The Star on Friday on its Facebook page to talk about the skin condition, how it has affected her life and how she changed the narrative of beauty by living a fulfilling life.
“There are just so many myths about vitiligo, especially in black communities. People often believe it has to do with some ancestral beliefs – fire caused by ancestors, being cursed or needing some ritual cleansing. But that is not at all what vitiligo is. It is a skin condition due to lack of melanin.
“Melanocyte cells are supposed to be actively producing melanin, but with this condition, those patches on the body mean there is no melanin, the melanocytes are not active.”
Tlhong had traces of vitiligo from the age of 2.
“It started spreading, mostly on my legs, and then when I was 14 it disappeared without me using anything. Then when I was 22, two tragic incidents happened while I was in university, and it started spreading again. One of the causes is stress, but mine isn’t that. It is genetic because from my mother’s side there are cousins with vitiligo. When it reappeared for me, it reminded me of when I was young and being bullied.”
She experienced depression trying to fit into what society viewed as normal.
“Society’s definition of beauty in 2006/7 was different to what it is becoming now. I had to snap out of that and redefine it for myself.”
After spending 10 years in a village with her grandparents, she moved to the city where she experienced people at their meanest.
“I had it for about three years before it disappeared initially. Children would always say I looked like a chameleon. The worst thing was when my parents would try to treat it and the ointments the dermatologists would give me smelled so strong, and the children in class would always comment about how I smelt like a pharmacy.”
Her parents have always been supportive of her, but it was her younger brother’s protection that really helped her become stronger.
“He used to stand up for me against the bullies. When it disappeared during my adolescent years I was happy I could be like other girls. When it did come back when I was 22 – I then had to deal with the traumas of the past.”
Tlhong went on a journey of self-discovery through seeing a psychologist, doing cognitive therapy and taking medication.
“I managed to beat depression and I haven’t relapsed in the past 15 years. I know my triggers and I know how to protect myself from different situations. Vitiligo forced me to go on a self-love journey. I redefined a lot of things and had an honest conversation with myself.”
When she started Beyond Vitiligo she was looking for a support group of people who were going through the same thing as her.
“I live by the quote: ‘Be gentle to yourself like you are to newborns, because the world can be harsh at times’. The journey has been amazing. I work with pharmaceutical companies that are doing research on the condition. I have had opportunities to give back to the community and travel the world.”
Tlhong said she was looking forward to the webinar to educate people on the condition.
“There is so much lack of knowledge, and it affects people differently. Having vitiligo has been a blessing in disguise. It has even changed the way I parent; I believe in empowering children.”
Tlhong will appear on The Star’s Facebook page @TheStarSA tomorrow at 6.30pm.
The Star