Health: five things to know about albinism

Five things to know about this peculiarity which is a source of prejudice, discrimination and even violence, on the occasion of the international albinism awareness day June 13.

What is albinism?

Albinism is a genetic abnormality hereditary characterized by the absence of melanin pigmentation of the skin, hair and eyes.

Those affected have very white skin, white or straw-colored hair, more or less red eyes.

The absence of melanin makes their skin very sensitive to the sun, which obliges them to protect themselves from the rays with clothing and sunscreens.

Also because of the absence of melanin, their vision is generally deficient and their eyes, which are very sensitive to light, must be protected by glasses.

Is it a disease?

Illness or not? The question is important: assimilating albinism to a disease contributes to the discrimination suffered by people with this anomaly.

Albinism requires protection from the sun, leads to an increased risk of skin cancer and is generally accompanied by blurred vision but does not prevent normal growth and development.

Also, Under the same sun (UTSS), an important association fighting against discrimination against people with albinism, prefers to speak of a “rare genetic condition”. She recommends the expression “person living with albinism” rather than using the derogatory term “albino”.

Other associations recommend abandoning the word “albinism”, which originates from the Latin “albus” meaning white, to use the term “amelanism” and “amelanic” (ie “without melanin”).

How many people involved?

This genetic anomaly is present on five continents, in all countries, but appears with very variable frequencies from one ethnic group or one geographical region to another.

According to the American public health research organization NIH, it is estimated that on average one person in 20,000 in the world is born with this genetic characteristic, which out of the current population of 7.9 billion individuals would make approximately 400,000 people.

In Africa, the frequency is higher, estimated between 1 in 5,000 and 1 in 15,000. Tanzania appears to be one of the countries with the highest frequency: one person in 1,400 is born there without pigmentation.

Why are they discriminated against?

People with albinism are stigmatized and discriminated against all over the world, but it is in sub-Saharan Africa that this “scourge” is most powerful because it is associated with acts of traditional witchcraft, explains UTSS.

Popular beliefs make them special beings, some parts of whose body can be incorporated into potions to attract wealth

In a study conducted in 2013, this association explains that carriers of albinism are objects of popular beliefs, maintained by sorcerers who derive particular economic benefits from them. They make them special beings, immortal beings or “ghosts”.

“One of the most dangerous myths is that parts of their bodies can be incorporated into potions to bring luck and fortune to their users,” according to this report.

How many victims?

In July 2021, the UN expert for the rights of people with albinism, Ikponwosa Ero was alarmed by “the notable increase in reported cases of people with albinism killed or attacked because some mistakenly believe that using their body parts in potions can bring them good luck and wealth”.

“More tragically still, the majority of the victims are children,” she added. A report by the United Nations High Commissioner for Human Rights noted “more than 200 cases of ritual assaults of people with albinism between 2000 and 2013”.

The UTSS association, which records this violence on the African continent, ranks Tanzania, Burundi, Malawi, Mozambique and the Democratic Republic of Congo (DRC) as the most dangerous countries.

One of the latest crimes to date: the body of a 4-year-old child was found dismembered in February 2022 in northeastern Burundi, presumably to supply trafficking with Tanzania.