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

N. Amma Twum-Baah (November 7, 2011)

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.

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

Vitiligo Diet

Vitiligo is a psychologically devastating disorder. Many patients are suffering from the disease due to the deficit of nutritional factors, which includes calcium, vitamins, proteins etc. A vitiligo patient should add those foods in his meals that are enriching source of nutritional elements. A healthy and balanced diet can improves the vitiligo patient’s conditions. Balanced diet is also helpful to make immune system better.


Is vitamin E, enriching food is necessary for the vitiligo?
Research shows that many times in skin due to the excessive amount of vitamins E, deposition of melanin is effected.
Vitiligo appearance is not always happens due to the depigmentary cells in body, but it can be through the vitamin E, too much amount. Vitiligo patients should avoid to take those foods that consists vitamin E, like oranges, gray fruits, lemons etc.

What kind of food a vitiligo patient should eat?
Vitiligo patient should eat vegetables, like green leaves, carrot, cabbage, spinach, Brussels sprouts etc.

Green leaves
Green leaves are a source of calcium & iron. Leafy vegetables are an ideal source to over come the weight and to avoid heart disease, high blood pressure etc.

Carrot 
Carrot contains antioxidant property, enrich source of vitamin A, and helps to prevent mouth & lung cancer.

Cabbage 
cabbage with the great source of fibers, vitamin C which helps intestines to stay healthy, and gives protection from colon cancer.

A patient also should eat fruits, like apricots, peaches, apples etc. Fruits contain different vitamins, calcium, minerals, phytonutrients that not only gives a healthy life, but also helps in removal of toxins.

Other Includes
Grains, nuts, olive oil, Soya beans etc. are also necessary for a vitiligo patient.
Grains 
Helps in maintenance of body PH.

Nuts
walnuts, brazil nuts, almonds are very helpful for a vitiligo patient.

Olive oil
It is considered as Mediterranean diet; consist of vitamin E, highly effective for health.

Soya beans
is a good source of antioxidant vitamins A, C, E, B- complex. it provides protection to body against dangerous toxins.
Further foods like, balsam pear, celery, gingili, chinese watermelon, broomcorn, pork liver & corn etc should be trying by a vitiligo patient. These foods help a patient to treat with the disease in an effective way.

Which kind of food, a vitiligo patient should avoid?
Foods like fish or hot thrill food such as shrimp, crab, and mutton should be avoided by a vitiligo patient, as the consumption of such foods can evoke the vitiligo, skin disease. More on a patient should keep his self away from alcoholic & flavored drinks, ice creams, chocolates, different kinds of junk foods, milk and dairy products etc.

Note:Food plays a key role in maintenance of health, but a vitiligo patient should also take proper medicines or take different therapies, along with food, in order to get recovery from the disease effectively.

Source: http://vitiligodiet.com

The first man to have Vitiligo

Henry Moss, a man of African descent who was born in Virginia, first began to experience depigmentation of his skin at the age of 38 years, beginning on his hands and eventually extending to his arms, legs, and face. Four years later, in the summer of 1796, he exhibited his body for a fee in taverns in the Philadelphia area as well as before members of the American Philosophical Society. Moss quickly became a popular attraction.

On a hot July day in 1796, curious citizens of Philadelphia pushed and shoved as they lined up under the sign of the Black Horse, which hung outside Mr. Leech’s tavern on Market Street. They were all there to witness a “Great CURIOSITY”: a man named Henry Moss who was born “entirely black” but after thirty eight years had miraculously “become as white and fair as any white person.” According to a broadside dated July 23, it was reported that Moss’s “natural colour began to rub off” and his “wool” was being replaced by “straight hair similar to that of a white person.” How, they wondered, could this be true? From eight in the morning until eight in the evening, Moss entertained visitors, who plunked down a half shilling for the chance to view this wonder.

The public’s preoccupation with Moss was unmistakable. According to Dr. Charles Caldwell, for at least those two summer months, the people of Philadelphia were utterly transfixed by the spectacle of Moss. As Caldwell noted in his Autobiography, “[T]he cause of this singular change of complexion was a theme of wonder to everyone.” The doctor went so far as to assert that Henry Moss’s name was as well known to periodical readers as that of John Adams, Thomas Jefferson, and James Madison. Although Caldwell was prone to exaggeration, we do know that Moss’s popularity prompted him to take his show (which was literally himself) on the road. He toured several American cities where he also drew crowds of curious onlookers.

Source: http://vitiligocover.com/vitiligo-in-history-henry-moss/

Vitiligo has always been there for centuries but the world has been ignorant to accept vitiligians in the society.

Lets live Beyond Vitiligo

Is albinism and vitiligo the same?

Definitions


Vitiligo -is a condition that causes depigmentation of patches of skin. It occurs when melanocytes, the cells responsible for skin pigmentation, die or are unable to function. The cause of vitiligo is unknown, but research suggests that it may arise from autoimmune, genetic,oxidative stress, neural, or viral causes.

Albinism (from Latin albus, "white"; see extended etymology, also called achromia, achromasia, or achromatosis) is a congenital disorder characterized by the complete or partial absence of pigment in the skin, hair and eyes due to absence or defect of an enzyme involved in the production of melanin. Albinism results from inheritance of recessive gene alleles and is known to affect all vertebrates, including humans. While an organism with complete absence of melanin is called an albino and an organism with only a diminished amount of melanin is described as albinoid. Albinism is associated with a number of vision defects, such as photophobia, nystagmus and astigmatism. Lack of skin pigmentation makes the organism more susceptible to sunburn and skin cancers
.
Source of information: http://www.wikipedia.org


The difference

Albinism may at times be mistaken for wide spread vitiligo but they are two absolutely different and unrelated disease entities.
A few of the major differences are, that Albinism is an inheritable disorder, and is present at the time of birth, while Vitiligo is an acquired auto immune disorder of the pigment which starts somewhere after birth. Albinism is a stable disorder which does not spread or improve, while Vitiligo can improve and worsen with treatment as well as on its own.
Albinism is of two types; one in which the whole body including the eyes, the retina, the skin and the hair, all melanin containing areas of the body are involved, and the other which affects only the eyes. Vitiligo on the other hand starts as a patchy disorder which can take many different shapes.

As far as the basic abnormality is concerned, albinism results from a biochemical defect in the making of melanin, while Vitiligo results from autoimmune destruction of the pigment producing cells, the melanocytes.

The most important difference however is that Vitiligo can be improved with treatment while Albinism can not!



source of info: http://www.antivitiligo.com/vitiligo/albinism-and-vitiligo.html


Lets live Beyond Vitiligo

Tips on dealing with emotional impact: children with Vitiligo

Dealing With the Emotional Impact

If your child has vitiligo, you know that even though it isn't dangerous to his or her physical health, it can still be a big deal. Any condition that makes kids look different from their peers can be emotionally tough, especially during the preteen and teen years when everyone's trying so hard to fit in.

Some kids are naturally more resilient and do just fine against these challenges. But others need a bit more help. As a parent you can do a lot to arm your child with confidence and self-esteem.

Here are a few tips:

Don't emphasize the vitiligo or put pressure on your child to cover it up. Your child needs to know your love and acceptance are unconditional.

Remind your child of all the things at which he or she excels — and how none has anything to do with skin color.

Teach your child to be comfortable explaining what vitiligo is — and isn't — to other kids. Once the mystery is taken away, most kids will stop staring and asking questions.

Encourage your child to say "yes" — to play dates, pool parties, trips, and any other experiences he or she might be tempted to pass on because of the vitiligo.

Urge your child to volunteer or get involved in something altruistic. Whether it's a food bank, pet shelter, or a political cause, giving back makes kids feel powerful.

Finally, get emotional support if your child needs it — especially if you see any signs of withdrawal, depression, or anxiety. Counselors, therapists, and vitiligo support groups can help.

Reviewed by: Patrice Hyde, MD

My war against the world: Vitiligo

It took me years but at least not forever to accept my skin condition to embrace myself, one thing that still keeps me going is meeting the guys who think that just because I have Vitiligo I am desperate for any man. Some of them have called me names: telling me that they are doing me a favour because there is no man who will want to wake up next to a woman with two colours. Nevertheless such nasty comments make me stronger everyday, and for some reason I thank them because maybe I couldn’t have thought of creating Vitiligo awareness in South Africa and being so open about my skin condition and Viducating them. I had sleepless nights thinking, what is really happening to my skin? Researching about it with my small ‘Sagem’ phone asking my family: why did it have to choose me? I nearly blamed my parents; it’s just human nature to always find someone to blame or something like that. I was going through a rough patch, sleeping in agony, crying trying to get it off my chest. It was a journey that I went through all alone until one day I couldn’t bottle up anymore and talked to my BFF about it. She was very shocked because I never showed that it bothered me any how, I had a way of hiding what was eating me up and you can never know what the next person is going through until he/she open up. After this ordeal, I looked in the mirror I saw a strong woman, saw no skin condition but a woman ready to make a difference in the community. That was the beginning of my quest and the end of the war against nature.

I am just a human being who went through a lot and viducating the next person really put a smile on my face for days. It took me two years to initiate Beyond Vitiligo because I didn’t have the courage to do so. I thank the Lord for all the wonderful people in my life especially family and friends.

Beyond Vitiligo is here to make a difference.

Lets live Beyond Vitiligo

It takes time to accept your appearance that you were not born with. Having conversations to myself: what happened to me? why me?, but still can't find answers to my questions because no one can really pin point what is the cause of vitiligo.Vitiligo has left emotional scars in my life, bad childhood memories and almost a shattered future. It takes hard work and courage to fulfill self acceptance. It took me a lot of time to change my persona in order to change the world. 

One of the main objectives of Team BV is to create a platform of vitiligo education to eradicate stigma on vitiligo in South African communities. Lets live Beyond Vitiligo is a call for every one of us to make a difference in their communities and love one another.

Cycle of Change

Beyond Vitiligo is based on the cycle of change developed by our marketing strategist. This theory describes the steps in which a person follows towards acceptance and looking beyond the skin. Its main purpose is to assist the community as well as those with vitiligo (Vitiligians) to accept Vitiligo as a natural cause.This has been illustrated in the diagram below:

Beyond vitiligo

Welcome!

A warm welcome to Beyond Vitiligo, I know most of you guys might be thinking what Beyond Vitiligo is and who is behind it. Beyond Vitiligo its more like self explanatory, it’s all about looking beyond the patched and pale skin towards the acceptance in the society. I would like to believe that vitiligo is just a word like black or white ….lol, basically we all human trapped in skin colour. In a nutshell, it’s all about changing the world’s perception towards people living with vitiligo.

Beyond vitiligo is the brainchild of Gaone Petronella Tlhong (you are welcome to check my profile on the blog). The objectives of Beyond Vitiligo are as follows:

• Awareness
• Support
• Vitiligo Education (Viducate)
• Acceptance
• Sharing ideas on cure and treatments
• Having fun!

Beyond Vitiligo was coined in 2009 in a bid to develop a vitiligo awareness organisation based in South Africa. Although, we are based in South Africa our main aim is to reach all corners of the world. Everyone is invited, feel free to leave your comments, follow the blog, tweet us and like us on Facebook.

Hope you find the information valuable.


Gaone aka Gee