Survey on Albinism Reveals High Discrimination

Survey on Albinism Reveals High Discrimination

A recently released survey on Albinism in Nigeria has revealed a very high level of discrimination against persons living with Albinism (PWAs). It says “Discrimination is widely experienced by persons living with albinism (PWAs) across the country regardless of the background or gender (96%) with women experiencing a higher level of societal discrimination (54%) within

A recently released survey on Albinism in Nigeria has revealed a very high level of discrimination against persons living with Albinism (PWAs). It says “Discrimination is widely experienced by persons living with albinism (PWAs) across the country regardless of the background or gender (96%) with women experiencing a higher level of societal discrimination (54%) within family and friends’ circles than men (46%).

Common places of discrimination, the report says, are public buses (23%), schools (23%) and villages or town squares (20%). Other places with lower reported cases of discrimination are religious centres (5%) and financial institutions (4%). Only very few (2%) say they have never experienced discrimination at any of these locations before.

The survey which covered both urban and rural areas because of the “difficulty in locating PWAs in most parts of the townships”,  also say several factors conspire to affect PWAs adversely. They include poor vision, unemployment, limited access to healthcare facilities and skin care solutions, as well as discrimination and low literacy level.

Conducted by The Albino Foundation (TAF) with funding from the European Union Support for Democracy and Governance in Nigeria (EU-SDGN) project, the survey which was carried out in six states cutting across the six geopolitical regions of Nigeria, shows that there is a higher percentage of women living with albinism than men (55% versus 45%).

It also shows that 65% and 33% practice Christianity and Islamic religion respectively while only 2% practice other forms of religion. Majority of the people with albinism are single (63%) and is reflected in all geographic locations where surveys took place. Married persons (32%) occupy the next highest level of concentration and to a lesser degree, Separated and Divorced spouses account for just 2% and 1%) of respondents respectively.

Jake Epelle, founder and chief executive officer, TAF who is upbeat about the outcome of the survey says “This is the pathway to knowing the credible, verifiable and accurate data of PWAs through EU funded first baseline survey for PWAs in Nigeria”.

Titled “Survey of Persons With Albinism in Nigeria”, the report also say “There is currently no known government welfare programme to cater to the health and education needs of persons with albinism”, leaving “parents of children with albinism particularly mothers as the primary caregivers for the children in all manner and form”; It however notes that “to some extent, NGOs such as The Albino Foundation, NITAP, Albino Support Group and Social Inclusion Group are helping to fill the knowledge, educational and awareness gaps”.

While the report says “neither the federal government of Nigeria nor state governments have a distinct policy footprint to cater for the welfare of PWAs”, it however notes that “some general hospitals render free treatment of PWAs with skin infections, eye tests and medications.”

“More often than not, no attention is given to PWAs and PWDs in terms of societal understanding and integration of these sects of people, as it is accorded other people with regular pigmentation. In consequence thereof, this disregard has resulted in little or no information about persons with albinism and persons with disabilities.”

“It is even an aberration that PWAs and PWDs have never been singled out for inclusion in countless population censuses that have been conducted in Nigeria and neither is there a national policy that seeks to address the plights and challenges of PWAs and other vulnerable persons in Nigeria. Hence, there are no demographic, economic and social data on persons with albinism in Nigeria.”

“The obvious consequence of this disregard is that PWAs and other vulnerable persons have to navigate the harsh socioeconomic and political terrain as nominal persons within the larger population, whereas they ought to be cared for and treated as special cases in view of their vulnerabilities in terms of access to good health, access to education, access to job opportunities as well as the right to vote and be voted for on a political platform.”

The baseline survey conducted in Kogi, Lagos, Kano, Adamawa, Enugu, Cross River  and the Federal Capital, Abuja,  say “a general consensus is that people living with albinism deserve to be treated specially. Being prone to earlier mentioned health challenges, they deserve to be treated differently to enable them adjust well into the society as well as enhance their chances of harnessing their potential.

According to the report, children living with albinism should be:

  • Given a front seat in class to help them have clearer viewing of the blackboard
  • Given extra time during class test and examination bearing in mind their sight challenges which put them at a disadvantage vis-à-vis their classmates
  • Encouraged to take leadership roles
  • Protected from verbal, physical and other types of assaults form classmates
  • Monitored in terms of their participation in outdoor activities

For the adults, it is expected that they:

  • Should be protected against assaults and threat to their physical bodies
  • Are financially empowered to ensure independence
  • Equipped with adequate information on proper healthy practices that enhance healthy living and less health issues
  • Given equal employment opportunity and
  • Posted to duties that ensure that they are protected from the sun

Albinism is defined according to the report “as a set of inherited abnormalities of melanin synthesis that is typically characterized by congenital reduction or absence of melanin pigmentation (the inability of the body to produce melanin, a photo-protective dark pigment that protects skin tissues from ultraviolet radiation (or UVR), which is attributable to the defective production of the enzyme, tyrosinase”. Albinism occurs in all groups of people – Africans, Asians, Caucasians, Indians, Aborigines, etc.

Medically, albinism is classified into four (4) broad groups: Ocular albinism (OA), Chediak-Higashi Syndrome (CHS), Hermansky-Pudlak Syndrome (HPS) and Griscelli Syndrome (GS). The CHS and HPS variants manifest with extra-pigmentary defects consisting of leukocyte, platelet, and reticular cell dysfunction while the GS strain can also manifest with immunodeficiency and neurologic defects.

Skin cancer is the most common malignancy among the Caucasians and it’s said to be rare in the Africans and the negroid skin. However, because of the rarity of skin cancers in Africans, the diagnosis is often delayed with consequent advanced presentation and poor prognosis. Ultraviolet radiation (UVR) is considered to be the primary agent associated with occurrence of all skin cancers in concert with genetic or constitutional susceptibility and result in ulcers, swelling, abnormal reddish flesh, variegate pigmentation and melanoma.

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