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•On International Albinism Awareness Day, foundation seeks better deal
By Perpetua Egesimba
Across the world, it has been observed that people living with albinism (PWAs) face many forms of discrimination. It has even been asserted that they are greatly misconstrued socially and medically.
Oftentimes, the skin condition of these people living with albinism is the subject of erroneous beliefs and myths influenced by superstition, which foster their marginalisation and social exclusion. This gives most persons living with albinism low self-esteem.
Against this backdrop, the Onome Okagbare Majero Foundation (OAM), co-founded by Onome Okagbare Majero and her husband, Akinlolu Majero, recently joined the United Nations to educate the public on albinism and also celebrate the 2017 International Albinism Awareness Day.
The day was approved by the United Nations General Assembly Resolution 69/170 of 2014. This effort aims to bring global attention to PWAs.
At a forum held at Lay Apostolate Centre, Yaba, Lagos, Mrs. Majero, who is also living with albinism, said the event was organised because the public lacked proper awareness of albinism.
Majero expressed the hope that during the event parents would see the need to properly bring up their albino children and treat them as equals with those who did not have the condition.
“I am a living testament, having been blessed with an amazing husband, Lolu, and a wonderful son, Dele. I also know many other persons living with albinism who have risen above the social constructs, biases and stereotypes that exist in the society.
“We believe that family plays a vital role in helping the albino child grow to become a strong member of the society. When this is done, we believe that the social perception would reduce and society would begin to re-adjust its perception about PWAs,” she said.
Majero explained that getting involved was easy and encouraging; in addition, she said one simple way to help PWAs truly look beyond the complexion was to reach out to an albino and be a friend indeed.
She said, “You can also get involved by joining the online campaigns to increase the reach, so we can curb the myths that surround albinism.
“Lastly, you can get involved by donating towards the skincare products we distribute to PWAs at events. Today, we will be giving out a scholarship to an albino child.”
Director, OAM Foundation, Rita Paul Okagbare, the mother of Onome Okagbare Majero, stated that the foundation had created better awareness about albinism to the general public, educated PWAs on skincare and living with albinism as well as empowered them to become better and confident members of the society: “We organise events and advocacy campaigns to aid these objectives. We also provide PWAs with skincare products, which are sourced from donations.”
Country director of the United Nations Information Centre for Nigeria, Mr. Ronald Kayanja, explained that for a person to be affected by albinism, both parents must carry the gene and, in that case, there was a 25 per cent chance that a child would be born with albinism at each pregnancy.
Kayanja said that the proportion of persons affected with albinism in the world differed from region to region: “In North America and Europe, it is estimated that one in 17,000 to 20,000 people are affected by the condition, while in sub-Saharan Africa, one in 5,000 to 15,000 could be affected, with specific countries having a much higher tendency, including estimated rates of about one in 20 persons in the general population carrying the gene for albinism.
“Other studies have suggested that in specific groups in Panama or in the Pacific region, the rate of people affected could be as high as one in 70 to one in 125.”
Kayanja said in Nigeria, the discrimination against PWA was not as bad as it was in Tanzania and some other African countries, where there was a higher tendency towards discrimination and bullying.
He lamented that it had been widely reported and documented that persons with albinism were hunted and physically attacked due to prevailing myths that their body parts, when used in witchcraft rituals and potions or amulets, would induce wealth, good luck and political success.
“Other dangerous myths that facilitate the perpetration of attacks are those linked to perceptions of their appearance, including beliefs and myths that persons with albinism are not human beings but ghosts, that they are sub-human and do not die but disappear.”
He said there was the need for effective protection of persons with albinism and members of their families and also the need to conduct impartial, speedy and effective investigations into attacks against them wherever they occur.
“Additionally, prosecution of perpetrators of attacks against persons with albinism should be swift, and we should ensure that victims and members of their families have access to appropriate remedies.”
Kayanja stressed the need for increased education and public awareness and activities on albinism promotion, in collaboration with regional and international organisations as well as bilateral, regional and international initiatives aimed at protecting persons with albinism.
Mrs. Udochukwu Happiness, a mother of two children living with albinism, said that she saw her kids like she saw all other kids around.
Udochukwu said, “I don’t feel they are different because they are children like others; one special thing about them is that they are brilliant and talented. What parents should do is to encourage them and give them self-esteem and value.”
She noted that they also required special attention at school and other places because, sometimes, they could not see properly. As such, deliberate actions should be taken towards their care: “Make them sit at the front, and let them go to school with glasses. Give them umbrellas for protection when they are outdoors in the sun. Their skin is very delicate; a little contact with the sun makes it to become something else.”
She advised parents to love and care for albino kids and give them the best education, which would enable them have great value that would make them accepted in the society.