Five things to know about this privacy, which is a source of prejudice, discrimination and even violence, on the occasion of World Albinism Awareness Day on June 13.
What is albinism?
Albinism is an inherited genetic disorder characterized by the absence of the pigment melanin in the skin, hair and eyes.
Affected people have spotless skin, white or straw-colored hair, and more or less red eyes.
The lack of melanin makes their skin very sensitive to the sun, forcing them to protect themselves from the sun with clothing and sunscreen.
Also due to the lack of melanin, their vision is generally poor and their eyes that are very sensitive to light must be protected with glasses.
Is it a disease?
disease or not? The question is important: the assimilation of albinism into a disease contributes to the discrimination experienced by people with this anomaly.
Albinism requires protection from the sun, increases the 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 against discrimination against people with albinism prefers to speak of a “rare genetic condition”. She recommends the term “person with albinism” rather than the term “albino”.
Other associations recommend abandoning the word “albinism”, which originated from the Latin “albus” meaning white, to use the terms “amelanism” and “amlanic” (meaning “without melanin”).
How many people are participating?
This genetic anomaly is present on five continents, in all countries, but it manifests with highly variable frequencies from one ethnic group or geographic region to another.
According to the American Public Health Research Organization NIH, it is estimated that an average of 1 out of every 20,000 people in the world is born with this genetic trait, which out of the current population of 7.9 billion people would make up about 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: 1 in 1,400 people there is born without pigmentation.
Why are they discriminated against?
People with albinism experience stigma and discrimination worldwide, but this “scourge” in sub-Saharan Africa is most powerful because it is linked to traditional witchcraft, UTSS explains.
Folk beliefs make them special beings, some of whose members can be combined into potions to attract wealth
In a 2013 study, this association demonstrates that carriers of albinism are folk beliefs, held by witches who derive certain economic benefits from them. They make them special beings, immortal beings or “ghosts”.
According to this report, “One of the most dangerous myths is that parts of their bodies can be combined into potions to bring good luck and fortune to its users.”
How many victims?
In July 2021, the United Nations expert on the rights of people with albinism, Ikbonosa Iro, expressed alarm at the “remarkable increase in reported cases of people with albinism being killed or attacked because some mistakenly believe that using parts of their body in doses could potentially It brings them good luck. and fortune.”
“The most tragic thing is that 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 attacks on persons with albinism between 2000 and 2013”.
The UTSS, which records this violence on the African continent, ranked Tanzania, Burundi, Malawi, Mozambique and the Democratic Republic of the Congo as the most dangerous countries.
One of the latest crimes to date: the dismembered body of a 4-year-old boy was found in February 2022 in northeastern Burundi, likely to supply Tanzania with trafficking.