Albinism

Beyond Race, Ethnicity and Gender

Albinism is a rare, non-contagious, genetically inherited condition which occurs worldwide regardless of ethnicity or gender. It most commonly results in the lack of melanin pigment in the hair, skin and eyes (oculocutaneous albinism), causing vulnerability to sun exposure. This can lead to skin cancer and severe visual impairment. Both parents must carry the albinism gene for it to be passed on to their children, even if they do not themselves have manifestations of the condition. 

The prevalence of albinism varies across the world. According to the World Health Organization, estimates vary from 1 in 5,000 to 1 in 15,000 people in Sub-Saharan Africa. In Europe and North America, 1 in 20,000 people have the condition according to the NGO Under the Same Sun. However, data on the prevalence of albinism by country remains scarce. 

The term “person with albinism” is preferred to “albino”, which is often used in a derogatory way.

The gene that carries albinism is a recessive gene or a gene that it is not dominant. The recessive gene for albinism becomes expressed only when two parents carrying the recessive genes pass them to the child. The albinism gene may ‘hibernate’ for generations only to spring back when a child who carries the recessive genes is born. There are several classes, types and sub-types of albinism defined by level of lack of melanin and body parts affected. There are two types of albinism, which include; Ocular (i.e. eyes) and Oculocutaneous (i.e. hair, skin and eyes)

What draws more attention to albinism, at least initially, is the unusual appearance of a person. The white hair and skin of oculocutaneous albinism is a powerful factor from the moment of birth. The new baby will often be much lighter in colour than any family member. In non-white races the colouring of the baby with albinism is a dramatic contrast to the family and community. Colour is a highly-charged characteristic in our culture now and historically. Strangers will often make unwanted and unkind comments about the appearance of a child.

Beyond colour, a child’s eyes may be moving rapidly and not focusing together. The child may have to squint, tilt his or her head, and hold things close in order to see. Contact lenses, glasses, and optical aids are used to enhance vision but not a solution to the visual impairment. Thus, the person with albinism often feels isolated not only in physical appearance but also in the conduct of everyday life.

Albinism is found in all races and in all animals. It is estimated that there are 2 million persons with albinism in Nigeria. Although, there is no known statistical or demographic data on persons with albinism in Nigeria. However, from the survey conducted by TAF and funded by UNICEF, Nigeria Office on Knowledge, Attitude and Practices (KAP) on children with albinism in Nigeria, it was estimated that about 40% of persons with albinism in Nigeria are children while 35% are female and 25% are male (adults). Albinism is found in all cultures in Nigeria and myths, stigma and discrimination differs from culture to culture. It is a taboo to find a person with albinism in some communities in Nigeria. If a person with albinism lays his/her foot in the community, he or she will be killed.

The sub-types of albinism include:

OCA1

OCA1 is due to a defect in the tyrosinase enzyme. There are two subtypes of OCA1.

OCA1a: Persons with OCA1a have a complete absence of melanin, the pigment that gives skin, eyes, and hair their coloring. People with this subtype have white hair, very pale skin, and light eyes.

OCA1b: Persons with OCA1b produce some melanin. They have light-colored skin, hair, and eyes. Their coloring may increase as they age.

OCA2

OCA2 is less severe than OCA1. It’s due to a defect in the OCA2 gene that results in reduced melanin production. Persons with OCA2 are born with light coloring skin, and their hair may be yellow, blond, or light brown. OCA2 is most common in Sub-Saharan Africans, African Americans, and Native Americans.

OCA3

OCA3 is a defect in the TYRP1 gene. It usually affects dark-skinned people, particularly black South Africans. People with OCA3 have reddish-brown skin, reddish hair, and hazel or brown eyes.

OCA4

OCA4 is due to a defect in the SLC45A2 protein. It results in a minimal production of melanin and commonly appears in people of East Asian descent. Persons with OCA4 have symptoms similar to those in people with OCA2.

 

People with albinism face multiple forms of discrimination worldwide. Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which fosters marginalization and social exclusion. This leads to various forms of stigma and discrimination: 

In some cases, women who give birth to a child with albinism are often repudiated by their husbands and their families, because they are not aware that both parents must carry the gene to pass it onto a newborn. Further, children with albinism are frequently abandoned by their parents or, more sporadically, the victims of infanticide, because of the appearance of their skin, the disabilities they may have as a result of their condition, and the belief that they may be a source of misfortune. 

The forms of discrimination faced by persons with albinism are interrelated. The right to education, for instance, is affected by vision impairment that can force a PWA to drop out of school. A poor level of education, in turn, can lead to unemployment and affect a PWAs right to an adequate standard of living, consigning many to poverty. 

The right to freedom from discrimination requires States to adopt comprehensive strategies to ensure that persons with albinism are afforded equal protection under the law and in practice. In Africa today numerous challenges continually confront millions of people living with albinism first as individuals and as a demographic group within the continent. Across African countries including Nigeria, Albinos are classified amongst the vulnerable groups of society, which includes people living with various kinds of physical disabilities.

The prevalence rate of albinism in Nigeria is ranked amongst the highest in the world with an estimated figure of over two million albinos living in the country.

The need for special attention to be given to the security and socio-economic wellbeing of all persons living with albinism and other vulnerable groups in Nigeria cannot be overemphasised. Specific areas of their lives require prime focus and special intervention. Identified areas requiring both governmental and societal intervention include healthcare, advocacy and social awareness education, social inclusion, academic education, economic empowerment, and socio-political protection from various forms of societal abuse and discrimination.

The poverty and lack of education suffered by albinos does not stem from any mental or physical disability, but mostly as a result of discrimination, social exclusion and stigma, and in some cases the human rights abuse they suffer as a result of their skin colour.

Statistics show that over 600,000 Nigerians living with albinism suffer discrimination from their families, schoolmates and peers. For instance, it is not uncommon to find families practicing infanticide on babies born with albinism. Or the deliberate neglect to educate children with albinism, believing that their employment chances are limited, and therefore their education a waste of resources.

Albinos, who do make it to school, suffer incessant teasing and bullying from peers, which fosters a core of low self-worth and assertiveness. As a result, many people with albinism do not have the full social or economic tools to live productive lives. Lacking the confidence to compete favourably with others in the labour market and therefore unable to reach their full human potential. Both the individuals and the country suffer, as the vast majority of the skills of this group are not being utilized for the greater benefit of society