Organisation fights for rights of persons suffering from rare disease
MIDRAND – Gaone creates an organisation that aims to help people with vitiligo accept themselves.
Vitiligo is a disease that causes the loss of skin colour in blotches and the rate of colour loss from vitiligo is unpredictable. It affects the skin on any part of your body and may also affect the hair and the inside of the mouth.
It occurs when pigment-producing cells die or stop functioning which results in the loss of melanin. The disease cannot be cured but it can be treated.
Gaone Tlhong, the founder of Beyond Vitiligo NPO, was diagnosed with vitiligo at the age of two and at that stage, her family did not know much about it.
At age 14 it disappeared from her skin and that gave her hope to enjoy her teenage life without any bullying until age 22 when it reappeared again and has not gone away.
Tlhong said she got to know about the disease at the age of 10. “I used to know it as mollo wa badimo translated as ‘fire from ancestors’ because one of my grandparents also suffered from it. So I sort of inherited the disease.
“I learned about vitiligo when I moved to Orange Farm with my parents as they took me to different doctors trying to find solutions.”
When the disease reappeared again it brought back all the hardships she faced and she was ashamed but she decided to take a stand and resort to inner-healing, self-love.
“I decided to do my own research about vitiligo and I found a lady in Nigeria who has the same disease and we started communicating. She became a sister to me and she played a role in helping me accept my situation.”
In 2011 she created an organisation called Beyond Vitiligo after identifying that South Africa only has a few organisations that deal with vitiligo. “I created this organisation to offer emotional support, vitiligo education, expectancy education and awareness.”
The organisation is sponsored by Incolabs and Avid brands. Incolabs supply them with essential packs that includes sunscreen and after sun lotion. Avid brands supplies Lipisano which is used for lips as they lose melanin.
The organisation is also in collaboration with international organisations such as the Vitiligo International Patients Organisation Conference (VPOC) which is in France, International Alliance of Dermatology Patients Organisation (IADPO) from Canada and Vitiligo in Africa organisation.
Besides her organisation, Tlhong has an anti-bullying campaign where she motivates children with the disease to learn acceptance at an early age to benefit themselves.
The late dancer, songwriter and singer Michael Jackson had vitiligo and his death date, 25 June was named World Vitiligo Day (WVD) since 2011.
For more information on vitiligo, visit www.medicinenet.com/vitiligo/article.htm
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