Young & Nigerian: Living with Vitiligo
by Kenneth Oliko
Vitiligo, sounds like chocolate, what is it all about?
Chocolate? “Vitiligo (vit-ill-EYE-go) is a pigmentation disorder in which melanocytes (the cells that make pigment) in the skin, the mucous membranes (tissues that line the inside of the mouth and nose and genital and rectal areas), and the retina (inner layer of the eyeball) are destroyed. As a result, white patches of skin appear on different parts of the body. The hair that grows in areas affected by vitiligo usually turns white.
When people turn from black to white, how bad is it. Are there any medical or health implications to this?
The main health implication is sunburn; this is because when you lose your skin color, you also loose melanin that protects from sun. Turning from black to white can be emotionally, psychosocial and psychologically devastating.
Does it affect a particular age group, geography or race?
Vitiligo affects men and women of all races and all ages equally.
Do you have any related discipline or training as regards the disease, Vitiligo?
No, I am a graduate of Business Administration & Management, PGD Fin Mgt and Cert. in Entrepreneurial Management. Accidentally I saw myself delving into Vitiligo information and understanding out of my personal experience. When I couldn’t get help from anywhere and was turning white by day, I had no option other than to search for info and help myself. It’s all about what you have set your mind to do, you can achieve especially when you are passionate and obsessed about the issue. I am so passionate and obsessed about the Vitiligo issue and how it has reduced the sufferers to life of misery and dejection. Am bent on making a difference and this I must do with quality information, thank God for Internet, it has made information and knowledge so affordable.
Until April 2010, there was no known cause of Vitiligo. Today, Scientists have discovered several genes linked to vitiligo that confirms theskin condition is, indeed, an autoimmune disorder.
Is there any data in Nigeria that tells how many percentage of Nigerians have it?
There is no data; we work with the world statistics which says that 1-2% of the World population has Vitiligo.
What is the cure or maybe preventive measure for those who already have it?
There is no known prevention for Vitiligo, otherwise there would be no such condition. There is no known cure as well no uniform effective therapy, but Vitiligo can be managed. Vitiligo is said to respond to treatment more when it is five years and less.
Your ‘Project 1000’, what is the concept behind it?
With the economic meltdown, there is no money anywhere, how do we get seed money to get started, we need help and support from Nigerians. How do we go about it, thus the concept ‘Project 1,000’? Our fundraising strategy where we are asking Nigerians to support and encourage us with at least N1, 000.
Take us into a peep of VITSAF and what inspired your incursion into this form of NGO. Is there any personal or related experience?
Vitiligo Support and Awareness Foundation (VITSAF) was born out of my personal experience living with Vitiligo and thus convictions that aroused from my experiences.
The best I did at the time was to search for other persons living with Vitiligo to share experiences with at least be in the midst of people who can really feel my pain. In search of people to share experience with and to support each other, I found them and to my surprise most were really wishing to meet someone to discuss the condition with too. I looked out for them to get encouragement and ended up encouraging them and by encouraging I got encouraged and thus the birth of Vitiligo Support from where I saw the great need and proceeded to run an organization and Awareness Foundation (VITSAF). It was really a great turn around for me, I saw the need, I saw people that needed special kind of help that nobody was providing. It was more than giving hope but educating the ignorant public too who has given Vitiligo and persons living with it all sort of names and attitudes. I had my own share of it, it wasn’t pleasant and I took it upon myself to educate the public support persons living with Vitiligo.
What vision do you intend to achieve with the Foundation?
To achieve a Positive Lifestyle and a Positive Perception for Persons Distressed by Vitiligo and the Disfigured in West Africa by year 2020.
Can vitiligo be eliminated or is it some disease that is part of human existence?
Vitiligo can be managed, can be eliminated and also cannot be eliminated. It all depends on the management, information and body type.
What local and international health organizations are you collaborating with on this?
Local organization is Nigerian Association of Dermatologists (NAD), International Organization is National Vitiligo Foundation Inc (NVFI)
How old is VITSAF?
VITSAF is about 2years old.
Has VITSAF been engaged in any past activities, and what are they?
Vitiligo Support group meetings, Inaugural Launch and Int’l Seminar with Keynote speaker Prof. Raymond Boissy, President and Chairman of National Vitiligo Foundation, USA , and other speakers such as Eryca Freemantle, International Corrective Celebrity makeup Artist UK, VITSAF Patron, Dr. Charles Ume Clinical Psychologist LUTH and Mrs. Susan Oyemade Former president of FLP, a nutritionist and weight management consultant.
People are more inclined to lend their assistance to what they already know, in this case like HIV and AIDS, Malaria, Earth Quake. For Vitiligo, how do you intend to get the support of both the public and private organizations?
It starts with letting people know what Vitiligo is all about, extensive awareness and enlightenment campaign. We have done a Documentary which will let the general public into the world of persons living with Vitiligo and other form of disfigurement. Physical attractiveness influences heterosexual dating, peer acceptance, teacher behavior, attitude change, employment interviews, and jury decisions, and that attractive people are less likely to be judged to be mentally ill, are liked and helped more, and judged to have higher social skills and greater opportunities for social interaction than unattractive people.
We work towards influencing positively all of the above. You maybe helping save a case someone you know might be in tomorrow. Anybody can come down with Vitiligo anytime.
Are there people suffering from this form of disease and yet are not aware?
I believe so because in the course of running the foundation and giving hope, I have come in contact with persons who have had Vitiligo for years and do not even know what it is called, others just tell me it’s mystical that they are being followed from the village. Some other ones have been running from one spiritual leader to another
What are your mediums to be used in creating awareness?
Vitiligo Awareness and public enlightenment campaign through Print Media – newsprints, softsell magazines, newsletters, illustrated comics. Visuals – Documentary, TV Fillers, Radio PSA’s, Animation clips. Social Networks and word of mouth.
When you talk about VITSAF being the only organization presently in West Africa addressing this need, do you mean your focus is not only on Nigeria?
Yes our focus is primarily West Africa though gets enquiries globally.
When we say Vitiligo, are we talking about Albino. Is there a similarity or are they two different ailments?
One of the differences between albinism and vitiligo is that complete albinism is present at birth and does not change significantly. Vitiligo is a depigmenting condition that is not usually apparent at birth but can appear at any stage of life. It progresses until most of the body resembles the skin of a person with albinism in some cases.
Who are the competent hands behind VITSAF?
Executive Director, Volunteer fundraising and 2 Volunteer
What are you intending to achieve with Vitiligo Purple Evening?
Awareness/Enlightenment, Fundraising and Presence.
How do you intend those at the rural areas to gain access into the offerings of VITSAF?
The rural areas are the reason we are planning VITSAF Vitiligo Support Group Offices in the 36States of the federation working with the locals. Our Radio PSA’s, Fillers and other awareness tools we hope to achieve in three Nigerian major languages.
With a Head office in Lagos , Branch office in Abuja and Support Group Offices in all 36 States of the Federation and across West Africa , we are looking at the future. How long does VITSAF intend to realize these?
By the special Grace of God, head office Lagos and Branch office Abuja will be up in about a year and for others in the next five years.
How do you intend to remedy the discrimination experienced by Vitiligo sufferers?
Awareness and enlightenment is key, people discriminate and stigmatize because they are ignorant, some feel is contagious so awareness, education and enlightenment will change this. Empowering and influencing persons living with Vitiligo to accept and love themselves for whom they are.
What do you mean by raising funds for “Empowering the Disfigured Project’?
Empowering the Disfigured is one of our unique annual Projects, where we empower the disfigured both facially and cosmetically disfigured to live positively and normal lives. Everybody cannot afford surgery and everybody cannot get the chance for surgery and surgery does not help all like Vitiligo, so irrespective of surgery to live normal lives. Funds raised for the Empowering the Disfigured project will be used for social event inclusive of talent hunt, where the disfigured will be encouraged to do all that they ever wanted to do in life eg modeling, singing etc giving hope and confidence to the withdrawn.