Albino people: beyond physical appearance

For albino people, being different is not easy. This hereditary metabolic disorder characterized by the absence of pigmentation (melanin) in the skin, hair and eyes, is accompanied by an even more striking dimension: discrimination. Thus, in countries like Africa, being albino means living a terrifying reality. Due to superstition the situation of these people is dramatic.

International Albinism Awareness Day is commemorated every June 13. It was in 2015 when the United Nations Assembly decided to establish this date with a very specific purpose. Promote and defend the right of albino people to live in freedom, to be respected and defended against any act of discrimination and/or violence.

We may think that the reason for this is due to the number of mutilations and murders committed each year in areas such as Tanzania, Burundi or the Congo. Beyond these unimaginable and incomprehensible acts, People with albinism suffer rejection almost anywhere in the world. They are singled out, they suffer bullying in schools and discrimination in the workplace.

So much so that in recent years more and more studies are emerging on this topic. Children and adults with albinism and hypopigmentation must face serious social and emotional challenges.

Albino people: beyond the absence of melatonin

To this day, the medical community still has not agreed on whether to consider albinism a disability. The reason? We are facing a unique condition that represents a minority sector of our society. However, the characteristics of this genetic alteration limit them enough that they cannot lead a normal life. Their uniqueness, their physical problems, as well as prejudice and discrimination very often lead them to isolation.

They often suffer from visual limitations, photophobia and quite serious dermatological problems. Thus, and although there are several types of albinism (up to 18 genes are known to be involved, with 800 possible mutations) most of them have experienced something very specific: rejection and the strangeness of their environment. His white hair, his pale and sensitive skin, the color of his eyes… These features always attract attention, especially if the family belongs to the black or Asian race.

At this point, we have to point out that from an early age we all have the need to be and feel accepted. In the case of albino people and especially in younger children, what they experience almost from the beginning is the weight of the difference. The veil of knowing oneself different.

In most cases, despite having family affection and support, It is common for them to develop low self-esteem, insecurity and emotional withdrawal. In this context, beyond albinism and beneath that angelic, fragile and even disconcerting appearance, another more complex reality is hidden, much more delicate and usually wounded.

Living with albinism

1 in every 17,000 people suffers from albinism. The African continent, for its part, has one of the largest populations of people with albinism in the world. In fact, in Nigeria or Tanzania one in every thousand people has it. All of this invites us to conclude with an obvious fact: the quality of life of a person with this condition will depend on two factors.

The first is related to the type of albinism you suffer from. For example, both Hermansky-Pudlak syndrome (HPS) and Chédiak-Higashi syndrome are two disorders associated with symptoms (burns, hematomas, hemorrhages, constant infections, hepatomegaly…) that can greatly affect day-to-day life.

The second, as we can imagine, will depend on the place where the albino person is born. Doing so in Africa will mean being immediately considered not a human being, but a Zeru zeru, a ghost, a white demon. Superstition combines with savagery to stage one of the most despicable cruelties denounced by organizations such as the United Nations. Murders, kidnappings, children who are mutilated to take their limbs as trophies, women raped under the idea that this way AIDS will be cured…

Now, things change radically if we move away from the meridian and go to a very special corner of Panama. In the Kuma tribe of this country, 1 in every 150 people is born with this condition. However, in this precious place on our planet, albino people are a gift from heaven, they are children of the moon or grandchildren of the sun. They are cared for, respected, cared for and revered as truly special beings.

It should be said that this preference is a relatively new practice. Until not long ago they were considered the impious children of the Spanish colonizers and rejection was also combined with violence. It was not until a little over two centuries ago that their vision has become more humane and sensitive towards this group.

Finallyas far as Western societies are concerned we must point out that this sensitivity is also improving over the years. Today we already have multiple associations around the world. An example of this is ALBA, a space where information and support are offered, where conferences are held, as well as constant activities and meetings to promote integration and give albino people greater relevance in our society.

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