“My vitiligo story”

Tijani’s story | Ogo’s Story | Growing up with vitiligo

Tijani’s story

Life’s beauty is hidden so deep that the eyes of man must strain to see them. Life is just a series of events, the outcome lies in our hands.

My name is Tijani Osumah and I have vitiligo. I had the regular life of a random teenager from a well-to-do family, private school, posh friends; the works. To me life was just a process, a series of events taking place over time. Things were moving normally; nothing made much sense to me, I guess I was just as obscure as the average 12 year old. Yes, I was called handsome once, having inherited the visage of my mother, pink lips which tons craved for and yes there was a time when I was referred to as the “human checkerboard”.

I saw it as a random morning, I don’t know if it was a Tuesday, or a Monday. I don’t know if it was in January or in May. But I went to bed, that I can remember, and I know I woke up the following morning. It was a random breakfast, but I guess nothing could hide under the colorful chandelier that graced the dining table from the ceiling. I noticed it at first, but chose to be quiet; I saw it as a negligible defect, something to fade away as soon as I dibble in a little dirt later. Yes, I was just 12. There were tiny white patches across the back of my palms and my feet; it was until a shower later that morning that I discovered it was all over my calves as well. I didn’t care any less; fear was the last thing on my mind. I just assumed it was going to fade away anyways. But I was wrong.

Over time, these little fellas started spreading, they got wider and wider, and then I was like WHOA! But I guess, the damage was already done. I was taken to the hospital to see a doctor, something I should have done three weeks before. There, for the first time in my life, I heard the word vitiligo. In as much as I’d love to go into details of Vit, as I like to call it, you might as well just Google it. But, yes it was vitiligo, auto-immune, no probable cause or cure, blah blah blah. I mean, I was perfectly healthy, I didn’t fall sick, didn’t eat something that tasted like wrong or feel unimaginable pain in areas of my body I never knew I had, No, but all that was coming.

The hospital recommended prednisolone (or prednisone) and hydrocortisone cream, these were steroid based drugs. When I was given, I took out the pamphlet that came with it and read the three lines of what it was aimed at curing and the twenty lines of side effects. Now the fear was starting to kick in, but what could I do? School was still going normal, well at least I thought it did, before the whispers and the questions. I missed a couple of mornings, sometimes days from school because of appointments at the hospital. But I always caught up in an hour or less. This is where the sad part started.

My mother was told by only God knows whom that my ailment could be treated with herbs. When I heard it, what rushed through my mind was boiled leaves in a pot, I could handle that, but I was wrong. So wrong that if it was a test, I would have made a negative 100%. So, like any concerned mother, mine took me to get the herbs that were required. I was drinking cups of boiled leaves for weeks. I wasn’t getting any better, just fatter which was really weird.

Someone else, I have no idea who, also told my mother that my skin change was a spiritual affair. Now I was starting to get pissed. As a Muslim, I am strongly against any form of spiritual practices, underworld, satanic or whatever they claimed sort of crap, it was all BS to me. But what could I do, it was just my word against theirs. My mother on the other hand was really starting to get worried, after making and seeing her cry the first time, I was willing to succumb to anything. See how women get to you. But yes I was taken to the depth of bushes, areas that weren’t even marked on maps. I was fed the worst sort of only God knows what these people claimed to be medicine for me. Some made me sleep, some made me puke, some made me grow fat, some made me grow very thin, and some made it even worse. But yes, it was all for my mother, whose tears pierce my heart.

I missed so much school, this was JSS3 and JSCE was around the corner. My so-called traveling for treatment almost a year all put together but all of this was during vital school time. I went through Nigeria’s depths and seeing things that give me nightmares till this day. I cried myself to bed each night, saying to myself “it’s all for mom”. Sadly enough, some progress was made. It wasn’t the money-hungry liars working, it was prayers. I was the most confused child there was, it all started when I was 13 and ended when I was 15. That was the worst two years of my life. But what was I to do.

After that, my parents and I decided to stick with the hospital, for both our best interests. And by God’s grace that was where my solutions lied. After consistent visits, steady treatment and unwavering faith, I have made a lot of progress. And I am gradually repigmenting.

Yes I missed a lot of school; my grades did shake a bit. But all that was temporary, I stood on my own two feet, a good grade wasn’t going to come to me while I was sulking behind closed doors because I was black and white. My mother eventually stopped the water works even though she does get teary once a while. But I’m happy now, and that’s all that matters to her and my father. I grew stronger, happier, a greater zeal and even better grades, even the JSCE I was worried about was smashing, I made 9A’s from 12 classes. I went to top of my class, made student president and was an excellent debater. I wasn’t going to let some skin color stop me. Yes, I go home with the stares, whispers, and questions but after so long, I guess nothing gets to me anymore.

My life was a serious journey, a thorough experience, an eye-opener. I have done my share of the crying and no more shall be done. I am living positively with vitiligo, each day of my life is challenge, it isn’t going anywhere until I face it.

- Tijani Osumah

Ogo’s story

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

The story of my growing up with Vitiligo

That was long time back… I was in class 2 when my mother first detected a small white spot on my back… She didn’t take that too seriously as I was just recovering from chicken pox, and she thought it was effect on the skin from chicken pox. But then the spots kept on increasing and I found it very amusing those days to follow the growth of those white spots… I used to find it somewhat interesting…

Then there were regular visits to different doctors… I never used to understand why… Then there were experiments on me by different doctors, the deep-muscle steroid injections, the dark thick ‘Ludermol’ oil that mother helped me apply on the spots and used to usher me to sunbath for half hour, but that half hour under the summer Indian Sun seemed to me like a lifetime… At times, when I was in Kolkata, I remember Dadu helping me apply Ludermol to my spots… I loved to play pranks with Dadu… I used to point to some part of my skin, imagine some imaginary white spot and used to squeal at Dadu “Dadu, here too!!! I just discovered a new spot!!!” And Dadu used to get all worked up, used to hurriedly wear his spectacles and used to start searching for the new white spot that I had just pointed out to him… And then he never used to find that spot anyways!!! ’Cos, it was of course imagined by me… The thought of fooling Dadu threw me into squeals of laughter and I used to tease him “See, u r so silly, I have made a fool of you.”

Sometimes, there were trips to far off temples along with my parents to ask God to assist me recover from this condition. At times, there was a change of doctors, for a second opinion, or a different opinion. At times, there were long distance travels with Appa to some place that I don’t remember now, for search of some form of medication for this. One vivid memory was seeing my mother silently cry one day when she saw a white spot on my head through my dark hair, and then she discovered one white hair there. I was surprised to see her cry, and could not quite understand what went wrong. These were all memories before my teenage years.

Now I was a teenager. And I was going to higher classes in school, happy, above average student. Had secret spots hidden inside my white socks, so no one in school knew about that and it was quite a happy arrangement for me.

Then came “the slap” that changed everything. Everyone was in the school assembly ground, doing our morning prayers before classes began. That day my shoes had gathered dust, and as a punishment I was supposed to open my shoes and peel off my socks and stand in a corner bare feet till assembly was over, then be bare feet the whole day.  How could I ever bring myself to ever do that!!!!???? There were those horrendous white spots right beneath my socks, which I had kept hidden so successfully from all my peers!!! How could I ever give up that secret and lose all friends? I just could not do that. So, when I did not listen to any of the teachers, stood transfixed, red with shame, then the teachers and the head girl complained to the principal of the school of my stubbornness. The principal came to me, repeated the instructions to me, once, twice, thrice, four times… Her voice was getting louder and louder with each repetition. Then she just slapped me in front of the whole assembly, whole school, all seniors and all teachers… Earlier I had somehow frozen hot with shame, but then something inside me broke, and then there were drops of moisture on my upper lips, sticky moisture in my armpits and my inner thighs, my mouth ran dry, but my eyes were watery… and then I was trembling and my legs gave in and I fell to the floor… I was fully conscious, and I remember no one coming to help me get up, everyone thinking in their minds “Serves the obstinate girl right”. Then I was bullied and forced to open my shoes and socks, then I could feel everyone gaze at my white spots, and those gazes felt like hot lava on my skin, burning me alive. I remembered the good luck of Goddess Sita, when she wanted it; the ground had opened up for her to fetch her in during the time of her death. Why was the earth not so kind to me? Why didn’t she open up for me to devour me in? Then I was bare feet the whole day in school, and I didn’t get up from my desk the whole day in fear of my white ugly spots being detected by more peers, I kept my feet carefully hidden in the cool darkness under my desk. Then at the end of the day, the principal called for me in her office, told me the punishment is over for me, I can wear my socks and shoes, and then she looked straight into me and said “There are some things that you HAVE to accept in life. The faster you accept it, the happier you will be.” That sentence held no special meaning for me then, nor did it have any special meaning for me for years to come, but now I realize the importance of those words.

Then came the difficult days in school… When I wanted to be friends with other girls in school, but they used to stare at me, make me the laughing stock among everyone. Then I remember my low confidence level while participating in any school programs, which I eventually gave up. Then those ugly harsh stares from peers, then those awkward questions from everyone, then those snubbing off by others… Then those teenage days when most of my school peers started blooming into beautiful looking girls (for it was a girls’ school that I was in), started dating boys and I started developing a hunch as I was ashamed of my body and my looks, and wanted to hide from everything and everyone around.

There was Mrs. Mukherjee, my English teacher; Ms. Majumdar, my Geography teacher; and Mrs. Niyogi, my History teacher. I will never forget them for their kindness and understanding towards me. They have formed me into what I am today. If people compliment today me by saying I am a woman of substance, I would say that all those substances were filled choc-o-block in to me by these teachers during my formative years.

The day I was being ridiculed by my class mates while we were all in back seats of the school bus, I remember Mrs. Mukherjee calling out to me to come to her, holding out her arms for me, and making me sit beside her. I felt so important and cared for, while I was sitting beside her, that moment I never wanted to be with my class mates anyways… Then I remember Ms. Majumdar, so uncool to look at, but with so much beauty within her. Seeing her, I learnt that beauty is only skin deep. What really matters is your thought and your personality. Otherwise how could such an uncool looking woman draw so much attention and love and respect even without trying a bit? And then there was Mrs. Niyogi, who was the only teacher who was kind to me the day the principal slapped me, she had later come to me, tried to console me with her kind words, while gently patting me encouragingly.

Then I remember those difficult days when I used to be depressed, used to cry long into the nights, feeling alone and low. I used to drift into a sleep where I dreamt of magic erasers, erasing off all my white spots… And then the erasers changed into a ferocious tiger chasing me in the dark, and I am trying to hide among the long elephant grasses around me… And I remember those difficult study hours, half awake, half asleep, knowing that I have to work hard and study and be successful, as I have to fend for myself, as I will be alone, and there will be no one for me. And thus with all these fears I grew up… and here I am today… Check me out in the pictures below…