OGO MADUEWESI- Laying the issues bare about Vitiligo
You have a Foundation reaching out to people with Vitiligo, how do you operate?
Yes I founded and im running Vitiligo Support and Awareness Foundation (VITSAF), a not-for-profit, patient–driven, patient-advocate organization incorporated in Nigeria and passionately concerned about the needs of persons living with Vitiligo, skin imperfections and autoimmune Disorder primarily in Africa, helping ameliorate the agony people suffer as a result of turning from black to white. VITSAF’s major goals are absolute Support to its members, extensive Vitiligo and skin health awareness and enlightenment; motivating behavior change around unusual visual appearance through Entertainment Education, understanding autoimmune disorder and achievement of World Vitiligo Day – June 25th.
Take us through the condition Vitiligo?
Vitiligo is an acquired sudden loss of the inherited skin color. Despite its long recognition, the cause of this disorder is still unknown. The loss of skin color 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 6 weeks after birth and after 80 years of age. Vitiligo is a hugely stigmatized condition in Africa, facing not only a visible, disfiguring skin problem, but with widespread social discrimination fueled by powerful myths, discrimination and stigma. The myth about vitiligo being contagious is likely the result of a common fear: people stay away from anything different. It has a major impact on the Quality of Life (QoL) of patients. It is one of the most psychologically, emotionally and psychosocially devastating chronic skin conditions, which has a major impact on both patients and their families.
What has it been from Childhood?
I grew up as a normal African child, I learnt quite a lot from helping my mother from a tender age, I would sit and prepare a big sack soaked corn into akamu alone, would hawk akara and akamu in my primary school days before going to school, during holiday I hawk puff puff in the village market, when she started selling moimoi in my Secondary School, I would wake up 3am to wash the beans and take for grinding amongst other chores.
I became a rebel at a very young age, didn’t just agree with so many things that were expected to be accepted, I was the most misunderstood in my house because of my hyperactive nature. Much later in life, Feb 2005 to be precise and at the peak of my career and life with so much dreams and plans, I was hit by a condition that started turning me white, a condition called vitiligo.
Is there a special day set aside for activities surrounding Vitiligo
Yes, 25 June has been accepted globally as a day for Vitiligo extensive awareness –World Vitiligo Day (WVD) however we are still advocating and campaigning for official approval while we gather signatures for our petition which we are presenting to UN this 2013.World Vitiligo Day – 25th June Initiative aims to generate knowledge of vitiligo, its appropriate care, arrest and treatment methods amongst the general public, health care providers, and governments.
There are a lot of people who don’t want us to stand up for our Rights and demand a cure and care. They say vitiligo is not life threatening and not contagious, and that we must embrace a life of a pariah, hiding ourselves from sunlight and from the society.
WVD initiative was initiated by me; it was a very welcomed development when I announced the campaign for World Vitiligo Day – June 25th online and through email to vitiligo organizations across the globe in March 2011. It was accepted by the vast majority though mixed feelings trailed the chosen date 25 June. My thinking was simple – the date would resonate within the broader community due to its, albeit unfortunate, connection to Michael Jackson, whose vitiligo was the most famous and publicly debated case of all time.
WVD is in accordance with the WVD global initiative as promoted and in collaboration with Vitiligo Research Foundation www.25june.org. Please support us with a signature, please sign our petition on www.25june.org as we work towards presenting to UN for official approval this 2013.
Any statistics about people with Vitiligo in Nigeria?
We do not have statistics of people living with vitiligo in Nigeria, we work with the general assumptions where the prevalence of vitiligo is believed to be between 0.5% and 2% of the world population on average, but local numbers may vary greatly. Large studies in China, India, and Denmark have found the prevalence to be 0.093%, 0.005%, and 0.38%, respectively. Gujarat, India is considered to have the highest prevalence in the world with 8.8% of the local people affected by vitiligo. Men and women are equally affected, but women are more likely to seek treatment. Getting the population of Nigerians living with vitiligo is a project we hope to carry out someday soon with Nigerian Association of Dermatologists NAD.