For albinos, being different is not easy. This hereditary metabolic alteration is characterized by the absence of pigmentation (melanin) of the skin, hair and eyes, accompanied by an even more striking dimension: discrimination. In some African countries, for example, being albino means living a terrifying reality. Superstition, the situation of these people is dramatic.
International Albinism Awareness Day is celebrated on 13 June, it was in 2015 that the United Nations Assembly decided to set this date with a well-defined objective: to promote and defend the right of albinos to live in freedom, to be respected and protected. any act of discrimination and/or violence.
- The psychological aspects of albinism show that this condition involves problems to relate and even to be productive educationally and professionally.
One might think that the reason is due to the large number of mutilations and killings committed each year in countries such as Tanzania, Burundi or Congo, but in addition to these unimaginable and incomprehensible acts, people with albinism suffer rejection in almost every country. region of the world, are denounced, harassed in schools and discriminated against in the professional sphere.
So much so that, in recent years, more and more studies have emerged on this topic. Children and adults with albinism and hypopigmentation face serious social and emotional challenges.
Today, the medical community has not yet positioned itself by considering albinism as a disability. The motive? This is a unique condition, which represents a minority in society, however, the characteristics of this genetic alteration greatly limit this group of people by preventing them from leading a normal life, their uniqueness, physical problems, prejudices and discrimination often end up leading them to isolation.
They tend to suffer visual limitations, photophobia and serious skin problems, so although there are several types of albinism (up to 18 genes involved are known, with 800 possible mutations), most albinos have already experienced something very real: the rejection and bewilderment of their surroundings, their white hair, their pale and sensitive skin, the shadow of their eyes, etc. , these traits always attract a lot of attention, especially if the family is black or Asian.
At this point, we should point out that, from an early age, we must all feel accepted, in the case of albinos and especially young children, what they feel, almost from the beginning, is the weight of difference, the stigma of knowing that they are different.
In most cases, despite the affection and support of the family, it is common for albinos to develop low self-esteem, insecurity and emotional withdrawal, in this context, far beyond albinism and behind this angelic appearance, fragile and even disconcerting, lies another more complex and even more delicate reality.
1 in 17,000 people have albinism. The African continent has one of the largest populations of people with albinism in the world, in fact, in Nigeria or Tanzania, one in a thousand people has this change, all this leads us to conclude an obvious fact: a person’s quality of life in this condition will depend on two factors.
The first factor is related to the type of albinism you have, for example, Hermansky-Pudlak syndrome (HPS) and Chedak-Higashi syndrome are two changes associated with a given symptomatology (burns, bruising, bleeding, constant infections, hepatomegaly, etc. . ) that can condition much of the day.
The second factor, as you can imagine, will depend on the birthplace of the albino person, if it is in Africa, it will immediately be seen not as a human being, but as a Zeru Zeru, a ghost, a white demon. Superstition combines with savagery to commit one of the most despicable cruelties denounced by organizations such as the United Nations: murders, kidnappings, mutilated children to seize their members as trophies, women raped by the idea that HIV is cured, etc.
This will change radically if we move from Africa to a very special place in Panama, in the Kuma tribe of this country 1 in 150 people with this disease was born; However, in this part of the planet albinos are a gift from heaven, they are the children of the moon or the grandchildren of the sun, they are cared for, respected, cared for and revered as truly special beings.
It can be said that this preference is a relatively new practice, until recently they were considered lay children of Spanish settlers, and their rejection was also associated with violence, only recently, almost two centuries ago, the local vision has become more human and sensitive with this group.
Finally, as far as Western societies are concerned, it should be noted that this sensitivity also improves over the years. We currently have several partnerships around the world. An example of this is ALBA, a space that offers information, support, conferences and promotes constant activities and meetings to promote integration and give greater relevance to albinos in our society.