Ogo Maduewesi went to bed that night in February 2005, and without prior notification, she woke up with a strange white spot on the inner part of her lip. She went about her regular activities for the day.
But dark-complexioned Ogo didn’t know that the light spot heralded a change, with far reaching social consequences.
Before she knew it, the spots had spread to her arm, neck and face – all on the right-hand side of her body. She was aged 30 then.
Ogo later found out from her doctor that she was suffering from a skin disorder known as Vitiligo. It is a disorder in which white patches appear on different parts of the body due to the destruction of cells that make pigment (colour) on the skin. This can affect the hair follicles, mouth, eyes, nose and some parts of the central nervous system.
However, Ogo’s mum believed that she may have been bewitched, as she had never seen anything as strange as this before. She thus prescribed spiritual solutions to the problem.
“My mum believed that it was a spiritual attack. So they kept suggesting so many supernatural cure options, which got me more confused. We disagreed a lot over the issue, because while I was learning to come to terms with an unfortunate change on my body, they were making it really scary for me,” she recalled.
She said, “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 it was fungal growth and prescribed ‘Ketoconazole’ which I used for two months with no improvement. A few more weeks went by, and still no improvement.
“Then I became concerned and was referred to a bigger hospital, to see a dermatologist where I was diagnosed. I was then sent for a series of medical tests, Kenalog injection was prescribed which I took and it affected all my joints badly. I asked questions and then I had started taking Folic Acid and B12 and felt it was the reaction, till it was made clear to me.”
Since then, she has endured embarrassing stares and subtle rejection from members of the public.
Luckily, Ogo’s arm and neck are now almost completely repigmented, thanks to nutritional supplements such as Vitamin B12, C, B5, Folic acid and a diet of vegetables and fruits.
But she travelled a long and tortuous road to this point. She recalls desperately trying out several options suggested by people, including drinking her own urine very early in the morning everyday for four months in 2006. She called it ‘urine therapy.’
“I stopped after four months, when I noticed that nothing had changed positively on my skin. The urine tasted very bitter, but I kept at it for those months as I anticipated that I would become free from Vitiligo, which had made my life really miserable,” she said.
She said the stigma was so strong that she had to walk out of employment twice, while she found it very difficult to relate freely with members of the public, whose actions showed that they were scared of her. She recalled an instance when a fruit seller refused to collect money from her because of her whitish hand.
She said, “She did not collect it until I used my left hand to give her the money. I had left my job at the time because I couldn’t cope with what was happening. I managed to get another job as a sales representative but that was worse for me with Vitiligo on my face.
“Usually, people look at my skin instead of listening to what I said. So I always felt like explaining to everyone that I was not born this way. I did not last on the job as I couldn’t just perform well. As threats began to arise on account of my poor performance and lack of concentration, I noticed that my skin depigmented further due to the stress.
“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 with his hands and asking with a very annoying laughter, ‘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 question? I felt so humiliated and embarrassed that I started crying.”
Ogo also recalled an instance when a girl jumped out from a commuter bus to avoid sitting with her. She said, “On seeing my face she screamed, causing the driver of the bus to halt and she jumped down from the bus. At that point, every other person glared at me as if I had a contagious disease.”
Ogo, who has also had her fair share of disappointments in relationships, said the turning point for her was when she decided to be positive about her status.
“I had to tell myself the truth, I needed peace, needed to think constructively again. Vitiligo is here and I just have to live with it positively, while managing and fighting it. What people thought or say was not a problem anymore, because what anybody says is their own opinion and never 100 per cent accepted by all.
“I remember when a guy I was dating narrated a dream in which he saw that he had vitiligo on his arms and felt so bad in the dream that I had rubbed it on him. He thanked his stars that it was just as dream. He told me this many years after the relationship had broken up,” she said.
Having got her life back with lots of optimism, Ogo has been busy rallying people with Vitiligo to share her experiences and offer care and support to them through her initiative -Vitiligo Support and Awareness Foundation.
VITSAF is currently rated as the only organisation pushing for the right of people with Vitiligo in Africa.
June 25 is currently being advocated as World Vitiligo Day, but still awaiting ratification by the United Nations.
Ogo explained that the campaign for that day to be officially approved by the UN was to further honour Michael Jackson, who had vitiligo, though he opted for repigmentation that made his entire skin white.
Every June 25 in Nigeria, members of VITSAF take to the street to create awareness about how to manage vitiligo and overcome the socio sigma that comes with it.
She added, “From my findings and experience, Vitiligo is not contagious or life-threatening, but it disfigures looks and has serious psychological effect. The exact cause of vitiligo is unknown, but it has been confirmed that an autoimmune component plays a role in the disorder.
Meanwhile, the Chief Medical Director, University of Ilorin Teaching Hospital, Dr. Abdulwaheed Latinwo, described Vitiligo as an auto immune disease.
He said there is no known way of preventing it. He said the treatment is variable and can be used to limit and reverse the disease.
“The treatment options are Psoralen, photo therapy, laser, steroid creams and important is cosmetic camouflage. Cure cannot always be achieved,” he said.