I was in the market some time ago; just purchased a chicken, while waiting for it to be cut I noticed the guys at the shop were staring at a particular direction. I followed their gaze and found out the object of attraction was a woman. At first glance she didn’t strike me as attractive (not that she was ugly) she’s advanced in age. I was wondering the reason for the continuous gaze and then it hit me; she had white patches on her face and hand. With the expression on their faces, I knew they were confused, probably didn’t know what was wrong with her. Who knows, one of them would have said leprosy if I asked.
I got wind of a skin disease called VITILIGO (pronounced vi-tea-lie-go) in 2008 during a documentary that revealed the late king of pop Michael Jackson was diagnosed with it. There have been lots of misconceptions. I recently went into research after the market incident to lend my voice on the awareness. In the course of the research, I got in touch with the founder of Vitiligo Support and Awareness Foundation (VITSAF). She’ll throw more light on the subject.
JMAD: Please introduce yourself.
Ogo: My name is Ogo Maduewesi, the founder/Executive Director of Vitiligo Support and Awareness Foundation (VITSAF). A not-for-profit, patient–driven, patient-advocate organization incorporated in Nigeria and passionately concerned about the Rights and Well-being of individuals living with Vitiligo, Altered images and skin imperfections primarily in Sub-Saharan Africa, helping ameliorate the agony people suffer as a result of turning from black to white.
JMAD: What gave birth to VITSAF?
Ogo: My own experiences and search for answers to some questions I came across living with Vitiligo and the public’s attitude, direct and indirect discrimination I experienced in my early years of living with Vitiligo. It all started with a quest to help myself live and manage the condition.
JMAD: What exactly is Vitiligo?
Ogo: Vitiligo is an acquired sudden loss of the inherited skin colour. Despite its long recognition, the cause of this disorder is still unknown. The loss of skin colour yields white patches of various sizes, which can be localized anywhere on the body. The disease affects people of all races, men and women, and all age groups. It may appear at any age; cases have been reported as early as 6weeks after birth and after 80 years of age. Vitiligo is not a contagious disease. Vitiligo can be rarely tolerated, being more often a psychologically devastating disease, especially in darker skinned individuals, in whom it is more easily noticeable. Read more and all you want to know about Vitiligo here https://docs.google.com/viewer?url=http%3A%2F%2Fvrfoundation.org%2Fsystem%2Fresources%2FBAhbBlsHOgZmSSI6MjAxMy8wMS8xMS8xNF8wOF80MV83ODlfQnJvY2h1cmVfVml0aWxpZ29fUV9BX2VuZy5wZGYGOgZFVA%2FBrochure_Vitiligo_Q%26A_eng.pdf
JMAD: When did you notice you had it and how did you feel?
Ogo: I noticed it Feb, 2005. It didn’t feel like anything because I didn’t know exactly what it was. I took it to be some sort of reaction.
JMAD: How is it diagnosed?
Ogo: It was not an easy one as I first met a Doctor who called it fungal growth and prescribed some cream which I used for about 2months with no positive results. I went to get a lab test where I was told I had some serious infection as they tried to talk me into believing that a part of my body was swollen. Then I tried the Skin clinic of General Hospital Lagos and on three occasions I was told I was late and couldn’t meet with the Dermatologist. Eventually it was diagnosed in LUTH Skin Clinic in June 2005.
JMAD: What are the causes?
Ogo: The precise cause of Vitiligo is not yet known. It remains unclear what causes damage to melanocytes and their subsequent total inactivation and/or disappearance in Vitiligo skin. There are several theories; the most prominent are autoimmune (self-destruction of melanocytes), Neurohumoral, related to abnormal detachment of melanocytes from the epidermal layers and auto cytotoxic. None are mutually exclusive, and it is likely that each of them partially contribute to the disease development. Others relate the onset of Vitiligo to emotional trauma due to accident, death, divorce etc.
JMAD: Is it communicable?
Ogo: No, Vitiligo is not a communicable condition however it is estimated that approximately 30% of Vitiligo patients have a family history of Vitiligo confirming it could be genetic.
JMAD: Is it cancerous?
Ogo: No, Vitiligo is not cancerous.
JMAD: Where can someone receive treatment, how is it treated and can it be cured?
Ogo: One can get treatment from any of the Skin Clinics in Teaching Hospitals and from private skin clinics. Truly there is no uniform effective therapy on Vitiligo yet however there are so many treatment options out there ranging from topical and some oral agents to phototherapy to Surgery (e.g. melanocyte transplant) especially when lesions persist despite appropriate therapy. Unfortunately we do not have variety of these treatment options available in Nigeria today. At all stages of therapy, keep in mind that vitiligo can be a lifelong disease that may extensively damage one’s psychosocial sense of wellbeing. Acknowledging this hidden impact of the disease on quality of life and offering support for dealing with it will improve the physician – patient relationship greatly and promote a positive outcome. Camouflage can always provide temporary cosmetic relief, and psychotherapy should be offered to help patients deal with the psychological disease burden.
JMAD: Have you or anyone you know, experienced discrimination?
Ogo: Seriously and it has lingered, we are faced with direct and indirect discrimination daily. In places of work, even in the medical community and ultimately in the social circles.
JMAD: What’s the difference between Vitiligo and Leprosy, and what are some of the misconceptions?
Ogo: These two conditions are entirely different from each other. Leprosy is an infection caused by a bacteria in which patient develops light coloured patches with loss of sensation and loss of hair over these patches. Vitiligo on the other hand occurs because of loss of melanin pigment from the skin.
JMAD: In your opinion, rate the level of awareness in the society?
Ogo: I really prefer an observer to help me answer this, but can say that, there was less than 5% Vitiligo awareness in Nigeria before we started, but today I dare say its about 20-30%.
JMAD: What is the June 25th day all about and how can people get involved?
Ogo: World Vitiligo Day is an annual day specially dedicated to people with Vitiligo. Conceived by patients for patients, World Vitiligo Day is a truly global event that aims to increase awareness of Vitiligo and raise funds needed for research and education. It has not been approved by UN yet, we appeal that you please support us with a signature on http://www.25june.org
JMAD: Any last words to those reading?
Ogo: I implore you to get enlightened, truly no knowledge is lost. Vitiligo is a condition anyone can come down with anytime. It really comes with serious psychological challenges, majority of people with Vitiligo do just exist not living, and others are confined to their homes. We do not need pity, but empathy.
Ogo had gone through the road of Vitiligo and she’s still standing tall. Do you know of anyone going through this transition, encourage the person and let them know they are not walking alone.
These are a few groups that can be of help :
Websites – http://www.vitsaf.org, http://www.25june.org
Facebook Pages – World Vitiligo Day – June 25th , VITSAFng, Walk For Skin Health
Facebook group – Vitiligo in Africa,
Twitter – @VITSAF Skype – vitsaf1
youtube – http://www.youtube.com/ogo1406
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