A guest post from Ogo Maduewesi,
Founder/Executive Director
Vitiligo Support & Awareness Foundation (VITSAF)
Vitiligo is usually being seen as less an issue to be bothered about irrespective of how discomforting and quality of life it affects. Skin is the largest organ of the body and major determinant of our social acceptance. Once there is a difference, everyone stays away from you because they wouldn’t want to be infected with it and also wouldn’t want to be seen with it. Parents warn their kids to stay away from such kids in School and from that Aunty or Uncle with white patches.
It’s a skin condition that is still being neglected and underrated even by the medical community (especially in Africa), more reason so many living with it has resorted to self medication of trial and errors. Can you blame me for marrying natural therapies and home remedies which I have come to find out is actually the way to go now? Today we can’t boast of any Vitiligo Specialist in Nigeria and I dare say West Africa as it’s obtainable in most countries.
Till you experience it or find yourself in a helpless situation where you are being stigmatized silently, misunderstood, segregated upon, stared at and atimes ridiculed for a condition you didn’t know a jack how it came about, don’t have any help nor control for, you wouldn’t feel or understand how hard it can be for one to struggle to live positively in the midst of trials, challenges & difficulties such as Vitiligo.
Vitiligo has left people rejected by their loved ones, destroyed beautiful relationships because of lack of understanding and yearning for physical beauty (before you judge, you might do worse). Women are more vulnerable to this as we live in a society where men comes first, they decided when to walk out of the relationship or marriage, when it happens to them the women are advised to stay and carry the burden with them but the other way round, it’s usually out of all the women in the world I can’t be trapped with this white and black thing.
If you doubt me, how can you explain a lady who stayed put in a relationship (or should I say in bondage) with a boy (man) for a decade and half despite all the maltreatment and she paying his bills, she refused to quit because she believed no other man would want her. At the end of the day because she tried to refuse recharging the boy’s phone, he let his mouth loose asking her and her mum if he will be blind to marry her with the patches when there are other women. My fellow woman wanted to kill herself for such a fellow who left her with a broken finger. The lady in question is not a baby but in her late thirties, she kept asking who else would want me with this condition?
Another watched the man she loved and was going to marry walked out of her life because he found out that her feet were completely white, it was a case am sorry, I can’t introduce you to my parents this way as my wife to be.
Are the married left out? The married are not left out, a man shared with me what his wife has been and is going through having Vitiligo on one of her legs, this an astonishing case because he went as far as telling me that I can never understand what the wife is going through not wearing short skirts anymore and always conscious of who’s looking at her leg, I then asked, what can you say of me being single and having it on my face? I got no answer to that.
Another married woman narrated how she has been wearing only long skirts for decades, no slippers or sandals except inside her car, just because she couldn’t stand the stares and comments, but surprisingly her husband wasn’t bothered.
Ok a 76 year old woman you would say will be bothered less, she is as worried and traumatized as a teenager coming down with Vitiligo having lived it for 50 years….before you ask what is wrong with her, she is still human likewise MJ who couldn’t just come to terms with Vitiligo nor accept it.
Men too have had their own share but has it really stopped them from having relationships? Not exactly and you know what I mean.
Not so many people will be able to handle or live with this segregation, being stared at daily with comments and annoying explanations to what they see Vitiligo as. People have committed and attempted suicide, others has resorted to in-door living for the rest of their life, others move around living in misery, agony and in bondage of vitiligo.
What can a man who is emotionally and psychologically dead offer himself and the economy?
Nothing much really has been done on Vitiligo awareness globally I dare say, from 2008 when I started, really surprising that around my country and in Africa, nothing has been done about the Vitiligo condition with exception of articles done in print Medias and obviously lifted from internet with no connection to what the sufferers really go through. Till today there is no World Vitiligo Day or Vitiligo Awareness Day (global), what has really happened globally I can’t really say, am beginning to believe the story that it has to do with the Big pharmaceutical companies who seem to be the only donor to Vitiligo organization and just particular about research on their drugs and some cash into their pockets without being necessarily bothered about the quality of life of these person, I may be wrong. Thank God today there are two organizations in Africa one a patient-driven organization – Vitiligo Support and Awareness Foundation (VITSAF) www.vitsaf.org and another founded by medical personnel – Vitiligo Society South Africa www.vitiligosociety.co.za, and baby support group [email protected] we are nursing in Kenya. I hope we will someday join forces to make the desired impact on the lives of persons living with Vitiligo both through awareness and support in Africa. I am calling on more patient-driven organizations around the world; it’s very obvious that Vitiligo is not a condition anyone who is not living with it is interested in like case of HIV/AIDS, Cancer etc. So it’s our call and we must respond to it!!!
Download a PDF version of our Skin of Color & Appearance publication from our website homepage www.vitsaf.org.
Ogo Maduewesi
Founder/Executive Director
Vitiligo Support & Awareness Foundation (VITSAF)
234702 516 5280
www.vitsaf.org, [email protected]