I didn’t pick my dad’s call for 6 months because he wanted me to stop talking about Vitiligo- Ogo Maduewesi

Ogo Maduewesi


Ogo Maduewesi’s experienced a sour drift in 2005 with the arrival of the first light patch on her face. This occurrence transformed her life forever. Being afflicted with vitiligo isn’t a joking matter but Ogo has chosen to make lemonades out of the situation. Ogo’s organization, Vitiligo Support and Awareness Foundation (VITSAF) , is spearheading the first effort to tackle the challenges surrounding vitiligo in Nigeria. She is on a mission to create awareness and provide succor for individuals, living with vitiligo. Vitiligo, is a skin condition in which white patches of skin appear on different parts of the body especially exposed areas like the face and hands

Introductionm
My name is Ogo Maduewesi. I am a typical Nigerian girl from the eastern part of the country. I do a lot of things at the same time. I just can’t leave my Vitiligo cause for any other thing .I believe you can talk about vitiligo and impact lives positively through it. I am one woman that believes so much in myself .I believe so much in inspiring others to bring out the best in them.

Discover
I woke up one day in 2005 to discover a spot on my lip. I think about three weeks down the line I noticed another spot .When I saw it, I said to myself: “I need to do something about this”. After trying out what my physician gave me for a few months, instead of getting a positive feedback, I was getting more white patches. I now had to look for a dermatologist and that was how they diagnosed that I have vitiligo. That’s how I got to know.

My state of mind
Before I met the dermatologist, I met a family doctor. I spoke with him on phone and he didn’t understand what I was talking about. When he saw me, this was his first utterance:” This is not happening”. His reaction got me scared. I asked him: “What is not happening?” He asked me if I know the condition Michael Jackson had. I said I don’t know. He told me it’s called vitiligo. He gave me the spelling and told me to go and read about it. When I read it, as a typical Nigerian you know how religious we can be, I just rejected it and moved on. When I checked online, it was as if all the negative things written about it found me. I read up things like vitiligo not having a cure and one might turn white completely. I was just scared. When I got to the hospital, I wasn’t told I have vitiligo, I just saw them scribble vitiligo on the form. I went blank .I said to myself: “Why will this happen to me? You know a whole lot of things were going through my mind. It was not a good moment.

Moving from the sad state
After finding out that I have vitiligo, the experience I had in the hospital wasn’t good. A dermatologist came to take pictures of us and tried to tell me what I am living with. She just said you are not the first and you are not going to be the last. I met another lady that same day that was diagnosed and she just told me:” I am going back to the village that is where I think I will find help”. I told myself: “I don’t think the village is where I will find help for this.” It was not easy. The funny thing is most people living with it; don’t even know what they have. I was eager .I needed to see other people. I needed to share other people’s experience. I needed someone to tell me: “I have the same thing and this is how I have been coping” but I didn’t get that. I was looking for experiences to get myself encouraged, in the process I found myself encouraging others. We had a support group meeting with Femi Segun, may his soul in peace. I just wanted people living with it to share their experiences. That was how it all. True Love Magazine did an article on it in June 2008 .It was a huge one. People started making enquiries, sending mails and all that. I was working on myself because I wanted to live my life

My wake-up call
My pastor preached a message and said something that you should not give people the power to bring you down you should be in control of yourself. It just got to me that I have been giving people power over my emotions. So I took a bold step by wearing a spaghetti strap to Balogun market. Before then, I had never worn a spaghetti strap without a small jacket .I decided to do it to see if I will be able to withstand the comments. I worked round the market from one end to another and was just smiling all through. People were making their comments and my fellow Igbo guys were making their comments. When I finished walking around, I boarded the bus again and I said to myself: “So for real, I have been giving people the power to bring me down to decide what I wear, what I do and where I go at a particular point in time.” From that day, it was a huge turning point and I now said:”I have my life to live, you choose to stare at me, and it’s up to you”. These days I say to myself: “I want to sell confidence to whoever wants to buy.”

Parents’ reaction
I called them on phone to tell them about it. My cousin told them something terrible about me that I have grown skinny and more like a walking dead. My father called and told me he wants to see me home the next day unfailingly .I told him I can’t make it because of my job’s commitment. My mum cried on phone, the news got to her. I travelled home in December of that year for the burial of one of my cousins who was part of the Sosoliso crash. I met my parents at the burial. Initially my experience with my dad wasn’t a good one .He couldn’t understand why I will be exposing myself while they are trying to shield me. While I was starting to talk about vitiligo, he just didn’t understand it. At first I listened to him and later I had to tell myself: “You need to live.” I didn’t pick my Dad’s call for 6 months because he wanted me to stop talking about vitiligo. Somehow, I didn’t know how it happened but he became my number one supporter. He became interested in my initiatives. My mother was heartbroken when in the midst of it; I went on low cut because she believed my braids will cover the vitiligo patches

What drives me?
I think one of the things that drive me is peace. Does that thing give you peace? Is it something you are comfortable and happy doing? Seeing smiles on the faces of people living with vitiligo drives me. I want to see them smile; I want to see them live. If not for the drive, I probably would have dusted my certificate and be involved in another cause .I want to see people with appearance challenges accepting themselves and living their life to the full irrespective of what the health community says or what the society says.

What breaks my heart
What breaks my heart when it comes to Vitiligo awareness is that the international community is yet to see it as something to give attention to. It’s not been easy I must tell you. I started this officially in 2009 and as at that time, we didn’t really have much people talking about vitiligo. We are doing the bit that we can but we need that recognition from the international community. In Nigeria, our health awareness goes in the direction of what the international community identifies with. It’s heartbreaking that there is a whole lot of works that we need to do .We don’t really have that kind of support. Recently I launched our crowd-funding project .Somebody told me that Nigerians don’t identify with things like this, that doesn’t mean we should not make efforts. We are not giving up hope

Vitiligo and my perception of life
It has changed my life completely. I have come to understand that humans are not who they are. What they say is not what they do. I have come to understand people for who they are. I have also come to understand that it’s not really about what the next person thinks, once I know what I am doing is right and legal. The typical human being always wants you to do something that will suit them. There is something I have noticed about the guys here. They try to bring a woman down at any given opportunity. When you don’t have a job, they use the opportunity to take advantage of you. Here, we don’t have the patience needed to get things started have come to understand that if there is something you want to do and you believe so much in, forget about what people will think.

Creating the Vitiligo Awareness and Support Foundation
My vitiligo foundation is created to share the experience I have had living with vitiligo .It’s to discuss what has worked and what hasn’t worked .Like I mentioned before, we created a support group without even knowing. That was how it started. I didn’t set out to start a foundation. I just found myself doing that and next thing is that we are found ourselves registering an organization.

Awards and achievements
I created a day set aside all over the world to put the spotlight on vitiligo. It’s called the World day of Vitiligo. Lagos State also sent me a commendation letter because I had sent them a letter for support .The recognition has been from individuals +
I have been given Architects of the Future Award. I am an Ashoka Fellow and I made the Tech Women Programme, a US sponsored programme.

Being a woman of rubies
A woman of rubies is that damsel who believes in her strength. The crowd doesn’t move me. I am happy that I have been able to use the resources I have to create something. Accept yourself for whom you are. It is not easy, I know. If you set your mind to it, you can make it happen .As a woman don’t allow a man to be your yardstick of achievement.

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Ogo Maduewesi


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