Living With Albinism: More Than Physical Appearance

Living with albinism is not easy. This hereditary metabolic condition is characterized by the absence of pigmentation (melanin) in the skin, hair and eyes.

However, there is one striking aspect that accompanies this disorder: Discrimination. For example, being albino in Africa means having to live in a scary reality. Because of superstition, these people’s situations are dramatic.

Every June 13, people commemorate the International Day of Awareness of Albinism. In 2015, the United Nations General Assembly decided to establish this date with a very specific purpose: to encourage and defend albinos’ right to live in freedom and to be respected and defended against all forms of discrimination and / or violence.

We may think that they decided to do this because of the number of mutilations and murders that take place every year in countries such as Tanzania, Burundi or the Democratic Republic of Congo.

Apart from these inconceivable and incomprehensible actions, people with albinism are rejected in almost every part of the world. People mock them, bully them and discriminate against them.

So much so that researchers have conducted lots of research on this topic in the last few years. Living with albinism and hyperpigmentation means having to face serious social and emotional challenges.

Albinos: In addition to lack of melanin

As of today, the medical community has not yet agreed on whether albinism should be considered a disability. The reason for this is that it is a unique condition that represents a smaller group in our society.

However, this genetic change limits them enough that they are not able to live normal lives. Their unique nature, their physical problems, and the prejudices and discrimination they suffer from often lead them to isolation.

They often suffer from vision problems, photophobia and severe dermatological problems. Although there are several types of albinism (up to 18 genes are known to be involved, with 800 possible mutations), most of them have something very specific in common: rejection and the feeling of being “weird” in one’s environment.

Their white hair, pale and sensitive skin, eyes… All of these traits tend to attract the attention of others, especially if the albino is African or Asian.

We must point out that we all need to be and feel accepted from an early age. For albinos, especially younger children, what they experience almost from the beginning is a heavy weight on their shoulders due to the fact that they look different from those around them.

Despite the love and support of their family, it is often the case that albinos develop low self-esteem, insecurity, and emotional withdrawal. In this context, living with albinism is not just sensitive and confusing. It goes far beyond that and hides a much more fragile and hurtful reality.

Living with albinism

1 in every 17,000 people suffer from albinism. The African continent, on the other hand, has one of the largest albino populations in the world. In Nigeria or Tanzania, 1 in 1,000 is actually born with it. All of this makes us realize something important: The quality of life of a person living with albinism depends 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 a 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 the albino was born. Those living with albinism in Africa have to deal with the fact that others consider them inhuman, perhaps even white demons.

People perform contemptuous and cruel acts against others who look different because of superstition. This has even caught the attention of the United Nations. Assassination, kidnappings, mutilation and rape are some of the things these people have had to suffer.

Support

On the other hand, if we go to a very special corner of Panama, there is a tribe called Kuna where 1 in 150 people is born with this condition. In this precious place, albinos are a gift from heaven.

They are the children of the moon and the grandchildren of the sun. Others look after them, respect them, and worship them. Those living with albinism can feel very special here.

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

Finally, as far as Western societies are concerned, we must point out that there are several associations around the world that support those living with albinism.

One example is ALBA, where activists support these people, hold conferences to inform people about this disease, and arrange gatherings to promote integration so that albinos can finally feel like accepted members of their community.