Living With Albinism: Beyond Physical Appearance

Living with Albinism: Beyond Physical Appearance

Living with albinism is not easy. This hereditary metabolic disorder is characterized by the absence of pigments, so-called melanins, in the skin, hair and eyes. However, it also includes another conspicuous and enormously stressful aspect: discrimination. Albinos in Africa in particular are experiencing a terrifying reality. The situation of these people turns out to be particularly dramatic out of a superstition.

International Albinism Awareness Day is celebrated every June 13th. In 2015 the General Assembly of the United Nations decided to set this date with a very specific aim: to promote and defend the right of albinos to live in freedom and to be respected and protected against all forms of discrimination and / or violence.

We may think that they decided to do this because there are numerous mutilations and murders every year in countries like Tanzania, Burundi or the Democratic Republic of the Congo. Apart from these unimaginable and incomprehensible acts , people with albinism are rejected in almost all parts of the world. People mock, bully and discriminate against them.

So much so that researchers have conducted numerous studies on the subject in recent years. Living with albinism and hypopigmentation means facing serious social and emotional challenges.

Girl with albinism

Albinos: Beyond the melanin deficiency

To date, the medical community has not yet agreed to classify albinism as a disability. The reason for this is that it is a unique condition that affects a small part of our society, but should hardly be a limitation. In practice, however, the genetic defect limits albinos so much that they are unable to lead a normal life. Their uniqueness, their physical problems, prejudices and discrimination often lead them to isolation.

As for the physical disability, if you can call it that, they often suffer from visual disturbances, photophobia and dermatological problems. Although there are several types of albinism – up to 18 genes are involved, with hundreds of possible mutations – most patients have certain “symptoms” in common: rejection and the feeling of being in an unfamiliar environment. Their white hair, their pale and sensitive skin, their eyes … All these characteristics attract the attention of those around you, especially if they have dark skin.

We need to point out that we must all be accepted and feel accepted from an early age. Albinos, however, carry a heavy weight on their shoulders even in childhood, as they look different from other children in day-care centers, from their classmates, teachers and neighbors. Many times, despite family affection and support, it is common for albinos to develop low self-esteem, insecurity, and emotional withdrawal.

In this context, living with albinism is not all fragile and unsettling. It goes way beyond that and hides a very sensitive and vulnerable reality.

Albino couple

Living with Albinism

Every 17,000th person suffers from albinism. The African continent is home to one of the largest populations of albinism in the world. In fact, one in 1,000 people in Nigeria or Tanzania is born with it. Worldwide, however, the following applies: The quality of life of people who live with albinism depends on two factors.

The first factor is related to the type of albinism they are suffering from. For example, Hermansky-Pudlak syndrome and Chediak-Higashi syndrome are two diseases that are associated with severe symptoms that can severely affect the daily life of individuals.

The second factor is related to the albino’s birthplace. Those growing up in Africa have to grapple with the fact that others consider them inhuman, maybe even white demons. In some areas, because of superstition, heinous and cruel acts are perpetrated on people who look different. This has even caught the attention of the United Nations. Kidnapping, murder, mutilation and rape are just some of the things these people suffer from.

Black mother with albino child

The history of albinos takes an amazing turn when we travel to a very special corner of Panama. There is a tribe in this country called the Kuna in which one in 150 people is born with this disease. In this place , albinos are a precious godsend. They are children of the moon and grandchildren of the sun. The others take care of them, respect them and adore them. Anyone who lives with albinism can feel very special here.

We have to realize that this is relatively new. Not so long ago, people viewed them as the unholy sons of the Spanish settlers. They combined their rejection with violence. The perception of albinism only began to change about two centuries ago, and in many places there is still a long way to go if we are to achieve its acceptance.

Associations in support of albinos

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 the NOAH self-help group, where activists support these people, hold conferences to inform them about the disease, and organize meetings to promote integration so that albinos can finally feel accepted members of our society.

“I now realize that I have a platform to inspire young girls, and as someone who has never had a role model that looked like me in my youth, I hope to be able to show that albinism can be beautiful and is just a different kind of normal. “

Thando Hopa

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