Ogo Maduewesi is a social entrepreneur and runs a foundation called Vitiligo Support and Awareness Foundation which supports people living with Vitiligo; with special focus on Sub-Saharan Africa and a drive for global outreach. She took time to share with Virtue Digest her views on several issues spanning personal development and mastery to the ups and downs of being a social entrepreneur and running a foundation.
What led to the birth of Vitiligo?
I woke up one morning in 2005 and noticed some spots on my face. I initially ignored it, but eventually went to see a doctor. I was told it was a fungal growth, and Ketaconazole cream was prescribed to treat it which I used but the spots kept increasing. By that time, I had started eating healthy- olive oil, fruits, vegetables etc. About the same time, I met my cousin’s family doctor whom I had earlier intimated on the patches on my face. Eventually, when he saw me, he raised an alarm praying earnestly that my condition was not Vitiligo. That got me scared. He began asking me questions. He then asked me to go research on it online and also asked me to read about the late Michael Jackson’s health condition. Everything I read that day was negative. Thereafter, he recommended a hospital for me to visit from which I was referred to Lagos University Teaching Hospital (LUTH). I wasn’t well received at all. There was no form of empathy or patient care shown even in the slightest form. Thereafter, my fears were confirmed, I had Vitiligo. The patches progressed so fast. On my first appointment in LUTH Skin Clinic, Kenalog injection was prescribed which resulted in a terrible experience for me. I began having stiff joints to an extent that if I sat or stood in a particular position for thirty minutes, it would be difficult to change my position. I would have to stretch painfully and slowly to aid flexibility at my joints. My menstrual flow became exceptionally heavy and dark. I couldn’t sit else, I would be soaked. This affected my sleep as well. I began living in fear of death. I didn’t know who to turn to. Fortunately, my mum’s cousin who practised nursing in America came home that year. So, I approached her narrating my ordeal. After taking a good look at me, she said there was something in my system that I was reacting to. Meanwhile, I had begun taking Vitamin B12, and folic acid, which are vitamins most Vitiligo patients are deficient in. She further asked if I had taken any injection in the course of my treatment. Then, I remembered and told her I had taken kenalog injection to which she exclaimed. She asked if any test was conducted on me before being administered the injection to which I answered no. Then she sat me down and told me the reality of my situation. She said either of two things will happen to me. The first being the joints may get stiffer and may not be functional again or secondly it would get out of my system. Thereafter she said, the doctors ought to have conducted some tests on me before administering the injection. At that point I knew I needed God’s intervention. I chose to brave the storm because I knew God had something in it for me. Thankfully, the stiffness of the joints began to subside gradually. When I went for my second appointment at the hospital, I narrated my ordeal to the doctors. When I asked for a drug I could readily get here in Nigeria, to my utter dismay, the same kenalog injection which almost took my life was prescribed to me again. That was the last time I visited that hospital. So, my search for other Vitiligo patients began. I needed to know how they were helping themselves; perhaps, it could be useful to me as well since obviously, I couldn’t get any help from the hospital. Initially, I was embarrassed because people didn’t want to come out to say they had Vitiligo. It was bad enough that they had it how much more, coming out to declare to the world that they had Vitiligo. Eventually, I began meeting people who were willing to speak about their condition. Then, I realised I didn’t even need encouragement. There were more people out there with the condition that needed to be encouraged, and that was how Vitiligo Foundation began. I never set out to open a Foundation, but my quest to help people and keep myself informed about the condition led to the birth of Vitiligo Support and Awareness Foundation. Then, we began having support meetings. The late Femi Segun, generously offered us his office for our meetings. It started as a support group until I realised we had to register it. At our meetings we got people to share their experiences, I found the people I needed and also offered them help in ways I could.
How does the Foundation run?
As the name implies, we try to give absolute support to people living with Vitiligo and create awareness as to what options are available to us. There was no awareness on Vitiligo before I started. Ours is the first Vitiligo Patient Foundation in Sub-Saharan Africa, if not the whole of Africa. We initially had physical support meetings, but we now create awareness on social media platforms. Sometimes I could be on the phone responding to a Vitiligo patient for hours. We counsel people and share knowledge of things that have worked for me. Thankfully, I now have access to some Vitiligo support centres globally and they are now coming up with new treatments which they send to me. We haven’t started bringing in the treatment yet due to logistics, but hopefully, when we have some things in place; patients will be able to directly order from my website and get it delivered to them. Also, earlier, I visited some Vitiligo patients, but not anymore. My schedules don’t afford me the luxury of time to do that, but I give audience on phone and it goes beyond Nigeria now.
Are there challenges or unforeseen developments in the course of running the Foundation?
The major challenge is resources. Another challenge is having people with Vitiligo come out. They would rather talk to me in private than come out. I told them without their input, I don’t have a case to make out there. We need evidence, we need their stories. We need documented stories to show out there that indeed it is an ailment that deserves the international body’s attention. I try to shift the focus from me to other people and that’s why in my forth-coming book, I chose to interview people from different parts of the world and share their experiences. My focus is on people living with it positively. The idea is to build confidence into people. I trust that when the book is out and when we are given global recognition, those hiding their faces will be motivated to come out. I’m also setting up a social enterprise; the proceeds made from it will be used to support the foundation.
What are your learning points so far?
Don’t ever quit. Giving up is not an option. Know yourself and know yourself well. Nigeria is not so much a country that empathizes but more of a “lip service” society. I’m not trying to run us down. We’ll rather be religious than take practical steps towards alleviating problems people face. Excuses are not tenable, if you want something, go all out for it. How do you want to get it done? How does it work for you? When I first noticed the patches, my friends will ask me to use certain make-ups not because I liked it, but because they had a particular look they wanted me to have. No one wants to know what I like. This is something I have learned.
How successful has your campaign been and how much support have you garnered?
It’s been successful but not as much as I would want. We’ve broken the ice and that is huge for me because the awareness is letting people know what Vitiligo is and also that it is not contagious. If people know, they will be well-informed as to how to relate properly with people with the condition. That is what I’m trying to achieve. I’ve written articles in the national dailies and done talk shows. I’ve received calls from where I least expected. So, one way or another, the awareness is being created. After so many failed promises, I had to do it myself. I walked into media houses, told them about my story and they began publishing and airing it. I remain grateful to our (Nigerian) media houses: TV, Digital and Print.
Please share with us some of the qualities you look out for in a potential spouse.
First he’s got to be someone who will accept me for me. He has to be much more energetic than me….smiles…He’s got to be humorous, responsible and obviously positive. We should be able to have intelligent discussions and uphold each other generally. Also, he has to be a little crazy, creative and someone who won’t shy from challenges. Most importantly, I want him to be my best friend and of course by default; he has to be God-fearing.
Have you found this person?
(smiles) I will let you know when it’s official.
Are there specific roles your parents played in influencing the woman you have become today?
Yes. Initially when we set out to begin the Foundation, my dad frowned at it because according to him, he was trying to hide the condition while I, on the other hand, was pushing myself out. Even though he said no, I was not deterred but I went ahead, because I don’t shy away from challenges. But now he’s one of my strongest fans.
Do you recollect how any friendly or professional relationship affected you either positively or negatively?
Yes. Initially, trying to find new friends who were also living with Vitiligo was a challenge. Then, I began to make friends, most of whom were not even Nigerians. Yes, they affected me positively. Some old friends showed some attitude while some just walked out of my life. I felt I owed no one any explanations for what I did or didn’t do. I wasn’t going to allow anyone dictate how my life should be lived. Some made sarcastic comments, and others pretended to care. However, because I am allergic to negative people, I had to let them out of my life. The only negative people I can give attention is people who are living with altered images because they are the people we are trying to reach in order to help them achieve their full potentials regardless of their altered images. I have some professional relationships, like Yan Vale, the CEO of Vitiligo Research Foundation. We met as I began my foundation and the collaboration has been awesome. I have connected to so many people across the globe, I co-authored a book. So many great things have come out of our relationships. Lee Thomas is another good friend.
With the benefit of hindsight, what do you think you would have done better if you had the opportunity to start all over again?
With Vitiligo, I wouldn’t say I’ll change anything because I have come to realise that everything has happened for a purpose which is what I am doing now. There have been many mistakes and there have also been lessons learned and honestly those experiences are priceless. Asides Vitiligo, I would have been working on a cause- focusing on young girls. I have a passion to see that they are well-informed and go after their dreams unapologetically. I intend to come up with comic books focusing on confidence for young girls.
Do you have any plans to collaborate with schools to give them talks on confidence and self-development?
The issue with the school system is the unnecessarily long protocol, permissions and all which takes time. I’ll rather do my thing, and let the schools come for us. Also, the Confidence Talks will come at a fee because it’s a product of the Social Enterprise which is in existence to achieve some set goals which on top of the list is sustainability of VITSAF.
Is there any advice you have for single ladies, married ladies and professional ladies?
To the single ladies, do not allow the society pressurize you into a particular mould. It’s not so much about how old you are or how old you are not. Rather, it’s so much about what you are ready for, what you want. Sometimes, it appears the society has a script for you to act out even when it doesn’t align with who you are. Single ladies shouldn’t be waiting for some guy to just come and marry them off. You actually should be living your life because it’s only while alive you can live. If you know what you want to achieve in life, go for it and work towards its full realization. Develop yourself. There are many free online courses. Go for them and be a better person. Do these things while you ‘wait’ for your future spouse. Be an asset not a liability. Build up your skills; don’t wait until you are married before you start living your life. Know yourself and go for what you want. Invest your time wisely. Be on the lookout and search for what you want. When you have it, it’s yours. For married ladies, if you know ways you can develop yourself, please do. Don’t rest on your oars; there are more feats to be achieved. For professional women, you can find what works for you. What works for your friend may not necessarily work for you. Find your balance and always prioritize your immediate family first.
What counsel do you have for women who have given up on their dreams?
I think this boils down to self-acceptance. If I project an image of self-acceptance, you’ll have no choice than to accept me, but if I present a rejected me to you, you’ll do well to reject me back. I don’t see any reason why an able-bodied person should resort to begging just because she couldn’t achieve a dream No, it shouldn’t be. It’s important to understand that each person has her own pace. The fact that someone accomplished a particular task in six months doesn’t mean it will work the same way with you. Learn to go at your own pace. Don’t give up on that dream, if it’s not working, try some other way, re-strategize, revisit it, think it and restructure it. You can actually do it. There is no point giving your energy to something you do not want. Why give people undue power to hurt you? Focus your energy on what you want. Go out of your way to learn in the field you want to focus on. Study more. Check stuff online to forge ahead.
What would you like to do if you had no fears, inhibitions or obstacles?
I want to get each person living with Vitiligo all across the world to live positively, to stand out and say, “Yes, I have this condition, it is there but it is not stopping me, I have to achieve my dreams”. I want to give grants; I want to be able to support causes. If I can build the confidence of every Nigerian and African girl, then, we would have a great nation and at large, a great continent. If you build the confidence of a girl, she will realise that she also has something valuable to contribute to her society. It’s not all about the man in your life. You can be who you are, and the man comes to complement you.
What would you like to be remembered for after you have transited?
I want to be remembered as one Nigerian girl who impacted lives positively. I want to be remembered as one Nigerian girl who redefined beauty by activating that Green Confidence in all especially women to accept and love themselves irrespective of perceived ‘flaws’. I want to be remembered for inspiring and activating the great potentials within for individuals to achieve what the society tags impossible. Yes, I obviously want to be remembered for working on the Vitiligo and altered image causes globally.
Thank you for the honour accorded me to share my story. I feel humbled. Thanks a lot.