These are our stories on how we have lived with Vitiligo and managed to overcome the challenges we face on a daily basis.

I used lipstick as a concealer for my vitiligo, this is my story by Tebby Mphela

A few years ago, in the year 2013, I was 22 at the time. One morning I woke up saw this little white mark on the right side of my mouth I decided to ignore it thought it was a minor thing. Few weeks later it became worse , it wasn’t sore which didn’t bother me much, it looked more like I had run into a really bad kisser who had bitten me…well that’s what a guy friend of mine asked me when he saw the spot, I laughed it off and unfortunately it didn’t get any better. Estimating about think a month later I went to go see a GP he said it’s nothing to worry about so I took his word and thought it would disappear. Months later there was no change, it got worse and I decided to go see the dermatologist. Date not certain of but it was September 2013 and I was diagnosed with Vitiligo, I had no idea what Vitiligo is. All know is when the doctor told me I felt scared and alone, my dearest mom had accompanied me to the doctor. She then started doing research on it and giving me print outs for me to read and know more about it, for a while I was in denial and hoped it would just go away. I started wearing lipstick when a girl from my class looked at me funny like I was carrying some bad contagious disease. From that day I wore lipstick trying to hide this new thing that I’ve been exposed to.

Finally 2 years later which seemed like forever, the nightmare of having to wear lipstick and explaining why I wore lipstick or explaining why my lips are “meaning” burnt according to when the lipstick would fade away…”It was a thing I couldn’t keep up with”. I started gradually, finding myself this new me I didn’t know of, doing more research, and getting to know what exactly this thing is. It became a problem because I didn’t think I would be accepted by any man. I’m a single young lady and the more I met people who just vanished the more I believed that maybe the root cause was this Vitiligo thing. “I had a lot of unanswered questions”,  I describe it as “thing” because that’s how it made me feel I. was different and different was new and new was scary and one ever noticed no one ever asked me about it and how I felt , I felt alone, I prayed though sometimes I never knew where  a to start. I just knew I was tired, tired of hiding ME… Tired of this hidden figure that could only be sustained for a short time. I then decided to let go and prepare myself for the worst, it only made sense to do so. I stopped wearing lipstick as often and started telling people about it, it was never an easy process but I gained confidence; yeah I guess it was all God’s work. I now surround myself with positivity and I’m working and trying to get the word out there to those unaware, I’ve followed and search for more people like me and that alone just felt like home, like peace like love, I Feel safe and content. “Love the skin you are in” because it all begins within you. Today I can proudly say I HAVE VITILIGO and I’m READY for any battle I will have to face with the help of God.

By: Tebby Mphela

Nobuntu Morake the beautiful and avigorous young lady.

 

“I am not this skin, I am the soul that lives within.” My name is Nobuntu Morake, a young ‘vitiligan’ lady, born and bred in Kagiso, a township in the west of Johannesburg. You are probably wondering what I mean by ‘vitiligan’, well I am suffering from Vitiligo. I developed the condition in the year 2005, I was in a third grade, I remember vividly the very first white patch to notice was in my chest. It wasn’t sore or anything else for that matter. But my mother got worried as the patch was deteriorating, spreading to other areas of my body. She then took me to a General Practitioner (GP), the GP diagnosed me with the then ‘rare’ skin condition, Vitiligo, thereafter referred me to a Dermatologist, where I would go for monthly treatment for close to 5 years. I remember how the Dermatologist would tell my mother that chances of my skin regaining pigment are high, because I was young at that juncture. As time went by, the patches became worse, it was as if I was not getting treatment, but I still believed that my skin would regain pigment over time, little did I know that I would undergo depigmentation for an epoch.

I went to different Dermatologists for better treatments, it was expensive and still no sign of regaining pigment. It came a time where my mother stopped taking me to different Dermatologists, so I continued with the treatment of my first Dermatologist, my skin would have brown spots showing signs of regaining pigment, but some time it would relapse. I was sad and frustrated when I noticed the condition was spreading to other areas of my body where the patches cannot be hidden by clothes. It was worse when it developed on my knees, it lead me to refrain from wearing shorts and skirts. It ripped off my childhood euphoria, I never thought I would recover the experience, emotionally. The years went by, came 2009, later in that year I stopped taking the treatment, I didn’t benefit much from it anyway because the condition was becoming worse. I was a teenager, still discovering myself, I was rejected, I was called with derogatory names, I was discriminated and I was ostracised. Every time I had to share my vitiligo story, I would breakdown, without even completing  the story, I would feel humiliated, engulfed with sadness. Well, at some point, I had to pick up the thousand broken pieces. I harboured so much pain, that it was consuming and debilitating. Day by day, I released that excruciating pain, day by day, I managed to annihilate my self- consciousness, it has been a herculean task, but it has been worth it. As strong as I am, I’m not self- made, I have a supportive family, this journey of self- discovery was not lonely, they walked me through it. My family are a powerful support system, they remain a star of a story that I will always tell.

I can’t say I’ve recovered from the ordeal, I’m still in the recovery process. I appreciate this condition, it has taught me resilience at a younger age. Today I can share my story without being emotional which is a sign of healing. I’ve grown to become the young woman I never thought I’d be, beautiful and vigorous.

My message to my fellow Vitiligans: Do not succumb to criticism, you must be impervious to criticism to salvage yourself from harmful remarks, otherwise society will chew you and spit you out so viciously, you wouldn’t recover the experience. You must love and take good care of yourself. Don’t let society’s perception of beauty define you, you are not ugly. Look at yourself beyond looks. You are unique and important.

With love ♥
Nobuntu

 

Gaone Petronella Tlhong: Fights For All to See Life Beyond Vitiligo

N. Amma Twum-Baah (November 7, 2011)[Image]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 [Image]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 “twin[Image]color,” “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.
[Image]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.

http://www.afrikangoddess.com/gaonepetronellatihong.htm#en