With love, faith and determination, Ogochukwu Maduewesi, Executive Director, Vitiligo Support and Awareness Foundation, resiliently fought the stigmatisation, associated with vitiligo. She luckily got back her natural skin colour to at least 95 per cent. Ogo as she is fondly called is happy and happier putting smiles on sufferers of Vitiligo. Oluwatosin Omoniyi writes
Could you tell us what inspired you to establish vitiligo as a full time profession?
It was out of my personal experience. I broke out with vitiligo in February 2005.
I was diagnosed in Lagos University Teaching Hospital clinic where the dermatologist said I have vitiligo. Before then, I had seen a doctor who happens to be a family doctor of my cousins’. And immediately he saw me, he was like, ‘oh, no this is not happening to you.’
I was like what is not happening, because I have called him on phone to say something was happening to me and we have gone to the laboratory, different laboratories, to run tests.
Eventually, he said this is vitiligo. So, when the dermatologist mentioned it at LUTH clinic, I was expecting her to go further to explain, but she didn’t say anything; she didn’t even mention it initially. I had to peep inside the prescription sheet.
When I tried to ask the man what it was, he just replied that it was not his job to explain to me. Suddenly, a dermatologist came and was taking our photographs; we were just two that had vitiligo in the clinic that day. She was busy taking photographs of me as if I don’t even have a right.
What was the beginning of the treatment like?
I was given an injection called Kenalog and this stuff reacted like crazy. It was bad. The experience was something else, better not imagined.
If I sit in a position for 30 minutes, my legs get stiffened. I won’t be able to move anything – it was that bad and terrible. I dreaded sleeping at night because by morning, I would have to crawl about the house like a snake before being able to stand up.
Luckily, I met a US-based nurse at my cousin’s wedding who explained the adverse reaction of the Kenalog injection to me. She told me that if it came off my system, fine but if it doesn’t, it means I may not be able to use my joints.
Is vitiligo a lifetime disease?
It is not an infection. Although, the World Health Organisation (WHO) called it a disease but I don’t believe it is a disease, rather, I see it as a condition. Before now, they would say that the melanin is destroyed.
Melanin is effective absorbent of light. In a nutshell, vitiligo is an auto-immune disorder. This is just like when you employ a security man to protect you and the security man now starts seeing you as the enemy and decided to attack you.
These stuffs are supposed to ward off diseases; they are supposed to protect us but in this case they start attacking itself. So, we have vitiligo as auto-immune disorder. I think most of us with vitiligo have that issues and it has to do with that B12 deficiency in the body system.
What were the symptoms before you were finally diagnosed with vitiligo?
There were symptoms, nothing was wrong with me. What took me to the hospital was the white patches. I noticed the white patches actually started from my forehead to the lips, the outer part of the lips.
I started looking for what was wrong with me because less than a month, my lips were not normal, I happened to be very conscious of my old self. Something was happening and I needed to know, at least to find out what it was from the onset.
I first met a doctor who said it was fungi growth, and gave me a cream. Although, she was not a dermatologist and instead of her to direct me to see a dermatologist, she assumed it was something she could do. But after a month, I noticed aggressive movement; it was coming out very fast. I had a segmental pattern.
It was just at the right side of me, which is the rare one.
What was living with vitiligo like?
I was embarrassed. I was almost beaten up, because I always stopped to question people I see with spot on their skin.
These were people who have gone through a lot and you are coming to ask them if was vitiligo.
They’ve gone through a lot in the sense that, the social exclusion, discrimination, segregation and the psycho-social challenges were so much.
What I tried to do then was to actually find these people who have been living with it, to share experience with them. I found people who actually needed help more than I do. T
hey actually needed encouragement more than I do, and I ended up encouraging them and encouraging these people, I got encouraged and that was how it started. Initially, we started out as a support group and I found out that it feels good.
What is the society perception of people living with vitiligo and how do family members relate with sufferers?
Really, it was not easy with my parents. My father believed that somebody inflicted me with it. He believed it was a spiritual attack and he would call me to go and tell that man who did this to me. After telling me this for like six months, I decided not to take his calls again until I feel better about.
Before doing that, I called him and told him that as my father and it is his responsibility to attack whoever he felt was responsible for my condition. Because, I do not believe anyone has done anything to me. ‘So if you believe so, go and handle that,’ I told him. When I did not speak with him for about six months, he calmed down.
My mother would tell me every minute to cover my head. She didn’t want people to notice it on me. I called her one day and told her that I needed to get use to people seeing it, because I needed to live. My siblings were avoiding eye contacts with me but I understood that they were all disturbed.
Don’t even talk about my friends’ reactions, because it was when stuffs like this happen that you really know your friends. But I am happy about all the challenges because it molded me and brought me to the person I am today. Friends said all sorts of unthinkable things about me. Some said it was nemesis and advised themselves to stay away from me.
There was a day some Law students from Lagos State University, (LASU), discussed my issue right in my presence, telling themselves that, “see bleaching gone wrong. You just wanted to bleach, see what you have caused yourself, imagine one side of your body white, the other black’ and I was walking; there was no place to run too.
Will you consider that as the most embarrassing moment of your life? No! There were several embarrassing moments of my life .I think the most embarrassing moment was somewhere at Ilupeju in Lagos, I go to Fountain of Life Church, I can’t remember what actually happened.
I think there was something in church and we needed to submit some documents. I went to a place to photocopy some documents. And some people there were stealing a look at me and moving far away from me. This man just got up and came to me and was like ‘see what you have done to yourself.’
He touched me and I was like ‘no, you don’t have the right to touch me but you can say whatever you have to say.’ I told him not to touch me and he said he could push me. He asked ‘who are you?’ Other people started laughing, saying ‘ look at this one, because you are who? See what she has done to herself and she even has the mouth to talk.’
God bless one woman who got up for me. She was so angry and scolded them to the extent that they apologised. That day, I didn’t go back to church. I cried from there back home. After that, I resolved that enough is enough.
One day I was coming back from church, I bought groundnut while inside the bus and as I was eating it. Then a young girl saw me and yelled at the driver to stop for her to come down.
You needed to see the way she jumped down from the bus. Other commuters stretched their necks to see what made her to behave that way. I turned and looked at them so that they could see the reason, they were like ‘wow.’
You can now imagine what life is like for people with extensive vitiligo. I know what they have gone through, because for me, I did not have up to 40 per cent of it. It was just by my neck, side of my forehead and one side of my hand.
How did you overcome your challenges?
First and foremost, self acceptance helped me a lot, because I needed to accept myself first and I needed to love me for me. If I’m waiting for you to love me, your love won’t even go far. With that came determination, persistence, faith, trust in God or whatever you believe in.
What did you really do to get your skin colour back?
I started natural management and first I found vitamin B12 with folic acid, it helps us. Then I started taking it and my body resistance was absorbing it this time around.
That is why we need intake of 2000 MCG with folic acid, micro miligramme of B12, we need it and then the intravenous injection we take once every two weeks. I became a vegetarian.
Then I became a vagan, vagan is a vegetarian who doesn’t eats beary fruits. So I stopped eating eggs and I did this for 18 months and I tried to do urine therapy. I took my urine every morning for four months.
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