Every year, on June 25, the world celebrates World Vitiligo Day. For Ogo Maduewesi, commemorating the day symbolizes a life-long journey in creating awareness for this skincare condition. In this interview, she shares how she discovered she had Vitiligo, why she is tireless in her quest in drumming up advocacy for the condition, and how her positive mind set has helped her move mountains. Be inspired!
You’re the founder of VITSAF (Vitiligo Support and Awareness Foundation); what does your Foundation do?
Vitiligo Support and Awareness Foundation (VITSAF), is a not-for-profit, patient–driven, patient-advocate organization incorporated in Nigeria and passionately concerned about the Rights and Well-being of individuals living with Vitiligo, altered images and skin imperfections primarily in Sub-Saharan Africa, helping ameliorate the agony people suffer as a result of turning from black to white.
That’s impressive. What is Vitiligo; and what would you like people to learn about the condition?
Vitiligo (pronounced vit-ill-EYE-go) is an unpredictable, generally progressive skin disease, which results in a loss of inherited skin color over the lifetime of the person. Vitiligo is a non-lethal, non-contagious disease and it does not cause any organic harm, but it has a devastating effect on social life of the affected person and their family. Over 100 million people have vitiligo worldwide, and a great majority of us affected suffer severely as a result of the social stigma and severe psychological burden that result.
I would like people to learn about Vitiligo as a pigmentation disorder, skin condition that is neither contagious nor transferable like most people believe. I want people to get as informed as they because Vitiligo does not discriminate race, sex, status, class, level and everything. Vitiligo can happen to anyone at any time.
Let’s backtrack a little bit. When did you discover you had Vitiligo? How did you feel, and how has it been living with the condition?
You never really know what is going to happen in your life; everything can be going along just fine and then out of nowhere everything changes in an instant. Sometimes, when we are faced with adversity, we discover a side of us that we may not have been aware of.
It was someday in Feb 2005, I woke up with the right side of my lip white, I gradually developed some white patches on my forehead, neck, arm, and neck all to my right side; I had no idea what was going on, but was not too worried. I thought that it was just a severe reaction on my skin from what I ate or used. I met a doctor who told me its fungal growth and prescribed ‘Ketoconazole’ which I used for 2 months with no improvement. A few more weeks went by, and still no improvement. Now I was starting to get concerned, got referred to a bigger hospital to see a dermatologist where I was diagnosed.
Who are some of the famous people who’ve had this condition? and how would you say they’ve managed it?
Oh! There are quite a number of famous celebrities who have vitiligo; the most popular of them being the late King of Pop, Michael Jackson. There’s also Amitabh Bacchan, the popular Bollywood Actor, Winnie Harlow from America’s Next Top Model, Rasheed Abdul Wallace, a former NBA player, and tons of others.
Because there’s a bit more awareness of the condition in those climes, they are able to manage it better. However, people living all over the world – developed or not; still face some of the same challenges.
What are some of the misconceptions people have about Vitiligo, and how does that impact the work you do with your Foundation?
Vitiligo is being trailed with many myths and traditional beliefs especially in Africa. Vitiligo is seen as anger of the gods, as nemesis, a curse, etc. For example, a tribe in Nigeria believes you get Vitiligo when thunder urinates on you. Logically, that doesn’t even make sense, but these are the perceptions that form the background for the work we do at VITSAF.
We are working to educate, enlighten and get the public aware that Vitiligo is a health condition that does not discriminate race, sex, class, level, tribe etc.
Together with Steve Haragadon, you finalized the concept behind the World Vitiligo Day, and have secured noticeable interest from the UN. What is the idea behind this day; and how will it be celebrated?
Steve Hargadon had sent me an email, asking what I thought about commemorating June 25 every year as a day to mark Vitiligo awareness. Ironically, I had been thinking along these lines as well, and excitedly told him that I felt the same way. About a month afterwards, I still hadn’t heard from him as to how he wanted us to proceed. Apparently he had been reaching out to big Vitiligo organizations, but hadn’t received positive feedback, and was discouraged by the whole process. I tried to encourage him to keep trying, and at some point, had to run solely with the idea.
Like him, I didn’t get a lot of traction at the start, but I kept at it, and kept contacting organizations. Finally, all my efforts paid off, when one day I received a really great email from Yan Valle, the CEO of Vitiligo Research Foundation who got so impressed with the idea, and decided to support. The very first World Vitiligo Day was marked at the Silverbird Galleria Victoria Island, Lagos on June 25, 2011. That same year, I was able to get people in different parts of the World to commemorate the day. I remember very well Indonesia, South Africa – an organisation was born out of theirs, different places in US and I think somewhere in Europe. You cannot imagine how happy I feel seeing that the result of that vision and all that hard work come to fruition.
The Day is yet to be officially approved and ratified by the UN, but we are working hard to make that a reality.
In addition to the advocacy work you do for Vitiligo, you’re also a natural skincare entrepreneur; tell us about that?
Yes, I do natural Skincare presently for personal use and for family. Who knows, I may consider launching out commercially in the future, someday when I’m very sure about the genuineness and quality of raw materials I have to work with. I am also an a Social Entrepreneur, running a brand called Vogo Designs and presently working on my new Social enterprise called ‘Impact Skin Health and Appearance – ISHAAC’.
That’s awesome! So what are the next steps for you; where do you see yourself in the next 5 years?
For me, the first thing would be to have June 25 every year officially declared as World Vitiligo Day, by the UN and WHO. I’d also love to see more Vitiligo support groups and structured information systems for people living with Vitiligo, in Nigeria and around Sub-Saharan Africa. And of course, I see myself reaching new grounds with my skincare range and social enterprise.
How do you deal with the stigma that comes from people reacting negatively to your skin condition?
A message by my Pastor titled ‘MIND’ got me started. I got to understand that making up my mind is entirely mine, that whatever I choose to do is my responsibility. I realized it’s a thing of the MIND. If you can work on your mind, you can have control over what gets you down or affects you. The purpose of the mind is to think, which it cannot do when overwrought. Peace of mind is of practical importance, for it releases that quality of mind-power that produces constructive results.
I had to tell myself the truth, I needed peace, needed to think again constructively, Vitiligo is here and I just have to live with it positively while managing and fighting. Now mobbing forward, what people think or say is no longer a problem, because their personal opinion has no direct bearing on my reality.
What drives you; what pushes you to keep moving forward?
I must confess, perhaps, the singular reason and purpose for having Vitiligo, is so I can talk about it and draw attention to it. That’s what drives me; the zeal to create awareness about this skincare condition, which has had many people suffering in silence. I love challenges as that really pushes me to do what no-one has done before or think what others say is not possible.
Till date, Vitiligo is still underestimated and neglected, often being referred to just cosmetic and not life threatening even by the health community yet ‘The World Health Organization (WHO) defined health in its broader sense in its 1948 constitution as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.”
There are some challenges in getting the word out. There are no funds from any International donor focusing on Vitiligo specifically, as opposed to when they do other skin conditions like psoriasis, acne etc. Again, these are some of the things that keeps me going as I want to see that positive impactful change.
What do you know now, that you wish you knew when you were younger?
Well growing up comes with so much in life. I wouldn’t say there are things I wish I knew when I was younger. Because all I know now comes with growth, experience and living life purposefully. I am glad I have grown and I’m still growing into the woman I really want to be.
Do you have any role-models or mentors; and who are they?
I have many of them, but related to my work just a few, and I’ll just mention Mother Theresa. (Smile)
How do you unwind; and where are your favourite vacation spots?
I wish you can ask me this again, in a year or two. I Love nature, I simply love nature. Throw me close to nature and you have made my day.
Last words of advice for upcoming female entrepreneurs?
Life is what you make of it.
Remember we are all different and the outcomes of same situations are usually not the same for all. Always remember to find what works for you and run with it.
Follow Ogo on Twitter: @Vitsaf
Photo credit: Hakeem Saalam
The Leading Ladies Africa Series is a weekly interview series that focuses on women of African descent, showcases their experiences across all socio-economic sectors, highlights their personal and professional achievements and offers useful advice on how to make life more satisfying for women.
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