Absolute support, extensive awareness, enlightenment and advocate for those living with Vitiligo, for their Rights and well-being
Active Vitiligo Support in Africa

The first encounter with Vitiligo

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. I was then sent for series of medical Test, Kenalog injection was prescribed which I took and it affected all my joints badly (getting out of bed became a nightmare as well as menstruation that month; black blood). This got me more worried and scared, I asked questions, then I had started taking Folic Acid and B12 and felt it was the reaction, till it was made clear to me.

I went on my next appointment to the hospital where ‘Kenalog’ injection was prescribed once more after sharing my pathetic experience with it. I left the hospital that day with the conclusion that they do not have solution to my problems, I never went back. The fear of the adverse affect of Kenalog would not let me go back as I realized even with depression and trauma I was going through, I still valued my life with Vitiligo than losing use of my joints. Again I was scared I might not be lucky the second time.

The experience with Kenalog informed me more about Vitiligo and dangers of some drugs, especially steroids. I searched further for information on Vitiligo which help me decide on which medication to try. I tried other therapies before finally settling for a very healthy diet (dark green vegetables, food rich in antioxidant, psoralen), Nutritional supplements – Vit. B12, C, B5, Folic Acid, and others such as Milk Thistle, St. Johns Wort, Gingko Biloba, I was on all of these consistently for a while and it has really helped me. Most challenging part in managing Vitiligo is repigmenting and depigmenting at same time. It was really a very challenging time; I was segregated, stared at; nasty comments, mockery and all sorts. All this was at different levels: some come when I try to explain, some when just on my own and some just anywhere. Looking different is a very big issue to handle in a society where there is no information about the condition.

As all this was happening I had left my job at the time because I couldn’t cope, but out of necessity, I managed to land another job in sales and moved on a little bit. Of course, the problem was that the job put me in contact with more people. Being in sales can be hard when you look “normal.” However, it is much more difficult with Vitiligo on your face. I always felt that people were looking at my skin instead of listening to what I was saying. I often felt like I had to find a way to explain what happened to me. I wanted everyone to know that I was not born like this and that I used to be normal. I did not last on the job as I couldn’t just perform, the threats started coming from the job and I depigmented more due to the stress.

Negative Moments

I remember a fateful day I walked into a Business Centre somewhere in Lagos to photocopy some documents and seated there was one strange man whom after staring at me for a while walked up to me rubbing my face and asking with very annoying laugh, what is this little girl? I was shocked at his confident arrogance, embarrassed, insulted and amazed that I asked him, do you have to touch me to ask that. To my surprise he busted out asking me who I am that he can’t touch me anyhow he wanted, now all attention was on me and already some people were laughing and making mockery of the patches, he went on saying, “why can’t I touch you, was I the one that asked you to try bleaching your skin and now left with white patches”, this brought about serious laugh from everybody in there. At this time I had lost it, I was so humiliated and embarrassed, couldn’t hold it and was already crying and was ready for the worst, he went on having fun humiliating with me, but at the time I had told him that if he dare touches me again that I will blow him. He advanced towards me again to touch me, but for the intervention of a woman in there who’s been watching all the while, I left there very sad and in tears.

Another time I felt so humiliated was the day a girl who got into the commercial bus I was already seated looked up and seeing my face (peak of my Vitiligo) screamed and the driver of the bus stopped and she jumped down from the bus. She made it so obvious that every other person now started staring at me as if I had some contagious deadly disease; I heard two people say in my native dialect, do you blame the girl? I tried ignoring their stares but was dying deep inside.

It was just a very difficult moment for me and having no-one to share with at the time, someone who understands what I was going through really at the time. So much to say really about what one went through living with Vitiligo, is it the nasty unfriendly comments, is it friends trying to avoid you, is it stares and conclusions from the ignorant general public?

I became scared of life, my future and my dreams! I was scared of dying with my dreams; I hated being pitied. A message by my Pastor titled ‘MIND’ got me started. I got to understand that the responsibility of the mind in me is mine 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. What people thought or say was not a problem anymore because what anybody says is their own opinion and never 100% accepted by all.

In search of people to share experience with and to support each other Vitiligo Support and Awareness Foundation (VITSAF) was born and getting started with this was really a great turn around for me.

I found Positive Attitude!
I found out that the power to fulfill my destiny is within me!
I am conquered with Positive Attitude!!!

- Ogo Maduewesi