Albinism

Written by David Ojo

WHAT IS ALBINISM?

The word albinism usually refers to oculocutaneous albinism-OCA. Albinism is a rare disorder that causes a lower amount of melanin to be produced in the body. Melanin is produced in the body by cells called melanocytes. This is what makes your skin hair and eyes dark. It helps protect your skin from harmful UV rays. In addition, melanin helps your retina and optic nerves to develop properly.

A mutation in  any of the genes responsible for the production and distribution of melanin is what causes albinism.

Albinism generally has varying degrees of extremities. Oculocutaneous albinism and ocular albinism are the most common types.

Some of the rarer and more extreme forms include the Hermansky-Puldak syndrome, the Chediak Higashi syndrome and the Griscelli syndrome.

The more extreme conditions are so intense that the people who have them usually have a low life span. This is because they may have neurological problems, lung, bowel and bleeding disorders. In some cases, their immune systems are not as strong as that of the average person.

Fortunately, these cases are very rare.

SYMPTOMS OF ALBINIISM

Some of the symptoms of albinism are:

Photophobia. This is an increased sensitivity to light.

Nystagmus. This is an involuntary back and forth movement of the eyes. In some cases, some albinos bob their heads in an attempt to offset this and see more clearly.

Strabismus. This is when the eyes are not aligned. You may be looking at an object and one eye is focused on it and the other is misaligned. This is also called being cross-eyed

Monocular vision. This is when there is a reliance on only one eye to see properly.

Astigmatism. This is an eye condition that causes vision to be blurry.

This list doesn’t pretend to be exhaustive. But it summarizes it really well. An albino basically has eye problems and skin problems.

HOW DOES ALBNISM AFFECT AN INDIVIDUAL?

Albinism affects an individual in two ways: physiologically and psychologically.

Physiologically

Because albinism affects the eyes and the skin, it follows that an albino usually can’t participate in most outdoor activities.

The more obvious physical challenge is the albino’s reduced visual acuity. I mean I have been called blind Bartimaeus or blind bat on a few occasions. Other people cannot imagine that there are some things we cannot see. I type this with a font 22. The average person can type at font 11 or smaller.

The visual impairment that accompanies albinism is one of the worst things about albinism in my opinion and experience.

Psychologically

Another thing that makes life unbearable for the albino is the issue of self-doubt and low self-esteem. Because an albino is usually different from everyone including family and friends, we usually find it difficult to accept ourselves as normal. At least I always found it difficult to. In my case, because I’m African, I stand out even more conspicuously.

I don’t know how it is in the West or other countries with light-skinned people, but in Africa, the taunts are merciless and relentless.

HOW TO MAKE LIFE EASIER FOR ALBINOS AROUND YOU

Everyone close to an albino has a role or two to play in making life easier for an albino.

I remember one story my momma used to tell me.

She said when I was born, in goodwill, her doctor told her that she needed to love me. She replied that she didn’t need to. She said that that she loved me already. Profound. Just profound.

She also tells a story of how when we were younger, my younger, more aggressive brother would go and fight the other kids who usually taunted me.

I might have felt out of place everywhere else, but I have always felt safe and accepted at home.

Unfortunately, not every albino has this luxury. In Africa, albinos are considered to be more potent for the use of sacrifices. I know this because I am immersed in a culture that hints at the supernatural powers of the albino.

In Nigeria, it is the general belief that albinos can see in the dark just like cats. This is a falsehood.

Support and love and acceptance are the greatest things that can be given to an albino to make life a lot easier.’

Physiologically, helping albinos is straightforward.

An albino has skin problems and visual problems.

This can be solved by simply providing umbrellas, sunscreen and clothes that provide protection and shade from the sun.

The albino can also be helped by also providing with glasses. Glasses haven’t helped me much.

But I do remember the first time I used glasses. It was like seeing in HD. Nothing comes close to the wonder I experienced that day in the doctor’s office.

Being an albino isn’t easy. But like I said earlier, love support and acceptance are the greatest ways to make life easier for an albino

Thanks to David Ojo for writing this for me!

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