BY OMIKO AWA
SHE was at the ground floor of the Nigerian Institute of International Affairs (NIIA), Lagos, receiving guests and giving directions on how to put the conference chamber of the institute, venue of the official launch of Vitiligo Support And Awareness Foundation (VISTSAF), in other. Beaming infectious smiles and donning simple attire that exposes her athletic physique, Ogo Maduewesi, Founder-cum-Executive Director of the orgainsation prances the stairs, taking special guests to their seats by herself. Her warmth and carriage leaves longing fondness of wanting to be with her, most especially, as she talks on Vitiligo; a skin disorder that is keeping many emotional depressed and out of active life.
“ I woke up one morning in 2005, to see my lips white. I didn’t bother because I’m allergic to many things, so, I felt it was one of those reactions until it appeared on my jaw, fore head and hand; then it occurred to me to see a Dermatologist, who said it was a fungi growth and prescribed some drugs, which after one month of usage didn’t make any change. “ She continues, ”this made me to go from one hospital to another in search of cure, but finally ended up at the Lagos University Teaching Hospital, LUTH, Lagos, where I was told it’s Vitiligo, a skin disorder. I was also directed to the Internet for more information on it, which I did.”
Before going to LUTH, charming Ogo had on her own prayed never to have the skin disorder, behold that prayer never reached her God, as the dreaded patches turned out to be what she had dreaded. This made her to lose her sleep.
“So, when I was confirmed to have it, I had no choice than to accept my fears and live with it. I used to have them on my hand, back, neck and head, but with time and medication they have reduced to some parts of my body such as my face, hand and lightly on my neck; while some have totally disappeared, ” she says.
“Em-mmm, when it started I was in a relationship, which ended as a result of already existing problems. I don’t believe it was the white patches that led to our parting though people say it was. However, between 2006 and 2007, I could not get into any relationship, because of my depressive mood and decided to take my time. I was so dispirited that I would not respond to anybody’s, ’h-e-l-l-o.”
But having read much about the skin disorder, Ogo mustered courage to lead a normal life, knowing that her despondency aggravates it. “By December 2005, it was spreading so fast on my body that I thought I had got to the end of the tunnel. My broken relationship further placed me in a traumatized condition … sorry that’s not the right word; I was totally depressed without knowing I was doing more harm to myself, because I had not really understood Vitiligo. At LUTH, I was asked, why my patches were spreading fast in just six months. I couldn’t really answer the question; I just stared, not knowing what to say. But, when I realised the harm I was doing to myself; you know…. I could have killed myself in that condition, so, when I was enlightened, I quickly changed my perception,” she enthuses.
“Yes, when you’re highly depressed, it does! It’s dangerous! Some people say they started noticing it when they lost their loved ones, job or something that triggers depression. I didn’t know all that, instead I was gradually killing myself, ‘thinking out’ my heart,” she says.
The Nnewi in Anambra State-native and second child in a family of six children, three girls and three boys, is no longer bothered about her skin patches, in fact, she has seen several embarrassing situations that she now flaunts them.
“Apart from the gazes, guys at various times have told me, ‘beautiful girl, if not for theses patches on your body, I would have gone out with you’. That’s is the type of psychological torture sufferers go through on daily basis. There was even a case of one of my in-laws directing a suitor through my mother to me, the you man after discussing with me never bothered to call on me again even when I had raised the issue of the patches on my body to him, which he didn’t see as something serious, but only to go back to reprimand the woman that directed her to me for doing so. When I was told of it two years later, I just said I’m not bothered, because I had gone over the depression of having Vitiligo,” she recalls.
Could all these be the reasons for the foundation? Ogo with all seriousness responds: “Yes! When I had Vitiligo, I started looking for people with the disorder, so that I could learn from them but none was available to explain anything to me. It was like I was getting mad, I was confused that I had to go to anybody with a patch to ask if it’s a birthmark or Vitiligo. It was then; I knew that there is something wrong with our society. I began to drop my phone number with people for anyone that finds someone with the skin disorder to call me. But the story True Love Magazine did on me in 2008 opened the floodgate for people to call me to find out more about Vitiligo. Hearing from them gave me the impression that they’re all crying for help and was happy when I started talking about it. So, I formed the foundation to create awareness, educate and inform people about the skin disorder.”
“Vitiligo patients face a lot of ridicule, she stresses, imagine when I buy something and give people money with my right hand, they don’t take it, but if I give them the same money with my left hand they will collect it; at times people run away from us, not wanting to do anything with us. So, when I made myself known, people started calling me within Nigeria and outside, inviting me to come to Ghana, Kenya and other African countries to do something for them.”
The search for information in the Internet made Ogo to meet Prof. Raymond Boissy, the president of the first Vitiligo Foundation in the world and invited him to Nigeria for the launch of VITSAF, in which he presented a paper.
“I’m proud today, that I have Prof. Raymond Boissy, the president of the first Vitiligo Foundation in the world partnering with me and also Eryca Freemantle as my Patron. I contacted them through the Internet, when I was sourcing for information and we chatted and today they are here, not only to present papers, but also to partner with me. VITSAF is linked to all organisations that have one thing or the other to do with Vitiligo,” she mutters.
Ogo, a young woman in her mid 30s believes so much in sufferers coming together to learn from each other and to create awareness about the disorder.
“It’s our talk and we have to ‘talk it’. Other people do the talking for those living with one ailment or the other such as Acquired Immune Deficiency Syndrome, AIDS, but for us, it is not so, that is the reason we have to do the talking by ourselves. People are asking a lot of questions that need to be answered; it is by doing the talking that we create the necessary awareness, educate people and disseminate the right information,” she intones.
Do you not seek solace in spiritual healing homes?
“Hey, I was invited to as many churches and spiritual homes as you could imagine, but I held to the belief that God can heal me directly if He wants without going to any pastor for prayers. I don’t know if it’s my early exposure to spiritual churches when I was growing up that made me to take that stand. I believe this happens to make me do what I am doing now, impacting on people and disseminating information for those undergoing the plight to live life to its fullest. It’s not all about fame or money, but to make sufferers to come out from their hidings and agonies to lead a normal live,” she enthuses.
Ogo, who graduated from Rivers State Polytechnic, and University of Ado-Ekiti, Ekiti State, and later Pan-African University, Lagos, having overcome piercing gazes and deleterious comments feels free to attend events and socialise, not minding her visible patches. She says it’s all about ones mindset and packaging.
“I try as much as possible to package myself properly, look good and trendy and not bothering who is saying what or leering at me. For, if you don’t do that people are ready to send you to your early grave with their stares.”
But, what could have caused it?
“Well, for now there is no known cause. But some schools of thought believe that the combination of genetic, immunologic and neurogenic factor could trigger it in most cases. Many people report pigment loss shortly after severe sunburn while others relate the onset to emotional trauma. However, Vitiligo is a non-contagious skin disorder in which white patches appear on different part of the body because the cells (melanocytes) that make pigment in the skin have been destroyed. This is common in exposed areas of the body such as, mouth, eyes, nose, hands, face, upper parts of the chest, nipples, genitalia, armpits, groin and sites of injury. It may spread to other areas, but there is no way of predicting where it will spread to and there is 20 per cent chances of spontaneous recovery,“ she informs.
“Because people don’t know the cause, they attribute it to one witch or wizard. For instance my parents were told that someone inflicted it on me, to prevent me from getting married. My dad at a point was almost believing this fallacy until we started getting information about it, she gushes.
So, with this, are you getting the support of your parents?
“Initially my father was against my establishing a foundation, he said you have something you are try to deal with and you are going to expose yourself to the world; but when he realized the magnitude of what I’m doing, he keyed into it and now he is one of my greatest supporters,” she says.
But why did you not conceal the patches at first? “Conceal!” She intones almost with a shock.
“I don’t want to conceal them.” She explains running her hand gently on the part of her forehead that has the marks, “though I have been advised to do that, but the truth is, if I conceal them, what will give me the hope and courage to talk to people about what I’m doing. So, it serves as a sign of encouragement to others having it, more so concealing them don’t come cheap,” she adds. “Instead of concealing them, I try to manage it with food and drugs. Dongoyaro leaves are wonderful on it, chew the leaf if you can, or put few drops of the oil in water and drink. Take enough of morning sun because of the vitamin D and don’t expose yourself to heat or the hot afternoon sun.”
Ogo, who why in search of information in the Internet chatted with Eryca Freemantle, who happens to be a sufferer, too, informs that Eryca apart from telling her more about the skin disorder, motivated her to actualise her dream. Was that why she is your patron?
“Having seen all she went through, I felt she is the right person to be the patron of the organisation. She was distressed for the first 20 years of her life and had gone through life touching experiences that would make people to know that there are people feeling or had felt the way they are feeling now; and that there are people that understand their plights. So, I chose her because of her tall credentials of impacting on people through her life experiences; besides she has Vitiligo on her back and also a corrective make-up specialist, which makes her more qualified to give advice,” she chips.
And the fund
“It’s not been easy, I combine my savings with the free services I get from people to run the organisation, but hopes to have international donors some day.”
Looking happy that the foundation has taken off, Ogo advises sufferers, “manage it, and don’t give up hope of living. Eat healthy and take your drugs. And if any drug seems not to be effective for six months try another; meet people living with it for information, education and counseling. And over all be loving, shun moody conditions and package yourself properly.“