ENHANCING ALBINOS’QUALITY OF LIFE

The government is making some right decision on albinos, writes Monday Philips Ekpe

Sometimes, good news gets swept under the rug if it does not directly concern the generality of the populace. The recent approval by the federal government through the National Council on Health to decentralise free skin cancer treatment for persons with albinism in Nigeria, for instance. Equally cheering is the even spread of the high-calibre administering centres. Teaching hospitals in Zaria, Maiduguri, Enugu, Port Harcourt and Ibadan, as well as National Hospital, Abuja are now set to aid prevention and treatment of the diseases often associated with this disturbing genetic state. One can imagine the relief this decision will bring to the patients, most of whom are financially and socially disadvantaged anyway, especially if implemented. Albinos synthesise Vitamin D about five times faster than dark-skinned people. The vitamin is produced when ultraviolet-B light penetrates the skin. The absence of or very low pigmentation means easy access for light which can then cause havoc. Clearly, Nigeria’s super-abundant sunlight has not been a blessing to the personal health of albinos here.

It is difficult to carry out any enquiry on albinism without empathising with sufferers and also wondering how human beings often jump into thinking or acting wrongly about people or things they know little or nothing about. Prejudices have led to discrimination, poor perception and ill-handling down the ages, with various consequences. Someone enters the world with missing or reduced melanin (the pigment that gives colour to eyes, skin and hair) and the person stands a risk of being viewed as sub-human by others. Sadly, albinos in most societies around the world live under this burden. They are even endangered in some cases. In Tanzania – the country with the largest population of albinos in Africa – and elsewhere, they are believed to be products of the infidelity of their mothers, especially involving White men. Worse still, they are seen as ghosts of former colonists. This oddity gets bizarre. In parts of southern Africa, people with albinism are labelled as cursed who possess magical powers and are, therefore, good for sacrifices. Such victims end up being dismembered and sold to witch doctors. The same twisted reasoning has had albino girls and women marked for rape with the belief that HIV/AIDS is cured that way. Even though Nigeria does seem to have such nasty tales, albinos here also go through other forms of abuses and deprivations.

But how is the congenital condition supposed to be their fault? Luckily, interests have continued to be generated by local and international advocacy, ugly incidents that come with this peculiar state of humanity and also numerous intellectual probes. Way back in 1975, A.N. Okoro carried out an investigation that took into account the existential experiences of 1000 Nigerians living with albinism. The work titled, “Albinism in Nigeria: A Clinical and Social Study,” scrutinised the different manifestations of the

HOW IS THE CONGENITAL CONDITION SUPPOSED TO BE THEIR FAULT? LUCKILY, INTERESTS HAVE CONTINUED TO BE GENERATED BY LOCAL AND INTERNATIONAL ADVOCACY, UGLY INCIDENTS THAT COME WITH THIS PECULIAR STATE OF HUMANITY AND ALSO NUMEROUS INTELLECTUAL PROBES

disorder namely, ocular (affecting eyes only), cutaneous (skin only) and oculocutaneous (eyes, skin, hair). The abstract captures the dilemma of albinos and likely remedies thus: “The much higher incidence among the more settled communities in the south, compared with the more nomadic communities in the north, may be related to greater inbreeding tendencies in the south. The sun and society are hostile to the albinos. Under the tropical sunshine, their melanin-deficient skin develops wrinkles, lentigines, actinic keratoses and epitheliomata from which they may die in early adult life or in middle age. Myopia and other ocular defects retard the progress of many albinos in school and they eventually drop out to seek disastrous menial outdoor occupations. Registering albinos early in life, assuring their families that albino defects are confined to the skin and eyes, advising on protective clothing and sunscreening agents, correcting myopia, assisting with indoor occupations, and early treatment of actinic keratoses and skin cancer should help many albinos to attain social acceptance and a ripe old age.” Hopefully. Public enlightenment and mounting pressure on appropriate authorities on this humanitarian issue cannot be too much.

Reverend Jake Epelle, founder, CEO of the Abuja-based The Albino Foundation and Executive Director of Regional Forum Albinism Africa, a 29-member-nation organisation with its headquarters in Nairobi, Kenya, is among the world’s most vocal advocates of albino rights. He poured out his heart in a media chat the other day about what has become his life’s overriding passion: “With God on my side, little education and less than an average income and no hands-on experience in the social sector, I launched the foundation whose vision is ‘a society with equal opportunities for persons with albinism.’ With help from close family members and friends who are sympathetic to my plight, I stepped out to achieve the foundation’s mission.

“I took a hard swipe at the untold challenges of people living with albinism—in Nigeria, Africa and the world in general—and summed them up into five thematic areas: Negative social issues linked to discrimination, stigmatisation and stereotypes; lack of adequate healthcare for skin cancer and visual impairment; lack of qualitative education and reasonable accommodation of the needs of people with albinism; need for economic empowerment by providing entrepreneurial and skill-set development; and formulation of policies and parliamentary bills sponsorship to promote and protect the rights of people with albinism. Looking back, after years of hard work, commitment and determination to see attitudinal change within society, focused policy drive and mainstreaming of albinism into various government programmes and projects, I can beat my chest and say that the present and future generations of people with albinism will never be the same again.”