Living With Albinism: Beyond Physical Appearance

Living with albinism is not easy. This hereditary metabolic disorder is characterized by the absence of pigmentation (melanin) in the skin, hair and eyes. However, there is one striking aspect that comes with this disorder: discrimination. For example, being an albino in Africa means living a frightening reality. Because of superstition, these people’s situations are dramatic.

Every June 13, people celebrate International Albinism Awareness Day. In 2015, the UN General Assembly decided to establish this date with a special purpose: to encourage and defend the albinos’ right to live in freedom and to be respected and to defend themselves against any form of discrimination and / or violence.

We can believe that they decided to do this because of the number of mutilations and murders that take place each year in countries such as Tanzania, Burundi or the Democratic population in Congo. Apart from these incomprehensible and incomprehensible actions, people with albinism are rejected in almost any part of the world. People make fun of them, bully them and discriminate against them.

So much so that researchers have conducted many studies on this topic in recent years. Living with albinism and hypopigmentation involves facing serious social and emotional challenges.

Albinos: Beyond their lack of melanin

To this day, the medical community has not yet agreed on whether to consider albinism as a disability. The reason for this is that it is a unique condition that represents a smaller sector of our society. However, this genetic change limits them enough that they are not able to live a normal life. Their uniqueness, their physical problems and the prejudices and discrimination they suffer, often lead to isolation.

They often suffer from vision problems, photophobia and serious dermatological problems. Now, although there are several types of albinism (up to 18 genes are known to be involved, with 800 possible mutations), most have something very specific in common: rejection and the feeling of being in a “strange” environment. Their white hair, their pale and sensitive skin, their eyes… All of these characteristics tend to attract the attention of others, especially if the albino is African or Asian.

We must point out that we must all be and feel accepted from an early age. In the case of albinos, especially younger children, they experience a heavy weight on their shoulders almost from the beginning, because they look different from those around them.

Many times, despite having family love and support, it is common for albinos to develop low self-esteem, insecurity, and emotional withdrawal. In this context, living with albinism is not just fragile and confusing. It goes far beyond that and hides a much more delicate and wounded reality.

Living with albinism

1 in every 17,000 people suffers from albinism. The African continent, on the other hand, has one of the largest albinism populations in the world. In fact, in Nigeria or Tanzania, 1 in every thousand is born with this. All this makes us aware of something important: The quality of life of a person living with albinism will depend on two factors.

The first factor is related to the type of albinism they suffer from. For example, both Hermansky-Pudlak syndrome (HPS) and Chédiak-Higashi syndrome are two disorders associated with symptomatology (burns, bruising, bleeding, constant infections, hepatomegaly, etc.) that can greatly affect the individual’s daily life.

The second factor is related to the place where an albino is born. Those living with albinism in Africa have to deal with the fact that others consider them inhuman, perhaps even white demons. People commit heinous and cruel acts against others who look different because of superstition. This has even called for the UN’s attention. Murder, kidnapping, mutilation and rape are some of the things these people have had to suffer.

Albinism in Panama

Things are taking a different turn if we go to a very special corner of Panama. There is a tribe in this country called Kuna, where 1 in every 150 people is born with this condition. In this precious place, albinos are a gift from heaven. They are children of the moon and grandchildren of the sun. Others care for them, respect them, and worship them. Those who live with albinism can feel very special here.

We must note that this is relatively new. Not so long ago, people looked upon them as the unholy sons of the Spanish colonists. They combined their rejection with violence. People’s perception of albinism began to change for only approx. 2 centuries ago.

Finally, when it comes to Western societies, we must point out that there are several associations around the world that support those living with albinism. An example is ALBA, where activists support these people, hold conferences to inform people about this disease, and set up meetings to promote integration so that albinos can finally feel like accepted members of our society.