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Albinism

What is albinism?

The word albinism comes from a Latin word that means “white.”  When people have albinism, they do not have the same amount of color in their eyes, skin or hair as most of the other members of their family.  That condition is called “oculo-cutaneous albinism.”  There are two kinds of oculo-cutaneous albinism.  A person who has type one has pale skin and light hair and has a lot of trouble seeing.  A person who has type two has more color in the skin and hair and better vision.  Some people just have albinism in their eyes, which is called “ocular albinism.”
Sometimes people or animals who have albinism are called “albinos.”  Most people who have albinism are tired of being called by their eye condition.  They like to be called “people who have albinism. “   That reminds others that they are people first and just happed to have an eye and skin condition.
What causes albinism?
Albinism is an inherited eye condition.  That means that a baby is born with it.  When people have a baby, the baby’s body has many things that the parents’ bodies have.  For example, a mother may have curly hair, and her baby may have curly hair just like hers.  If a father has brown eyes, his child will probably have brown eyes, too.  But it is possible that two parents who have curly hair could have a baby with straight hair.  Two parents who have brown eyes could have a baby who has blue eyes.  They have the gene that makes straight hair and blue eyes hidden in their bodies.
Parents who have children who have albinism may not have known that they have albinism in their bodies.  It was hidden.  They may not even know that albinism is in their body cells until it shows up in their child.  Or they may remember that someone in their family had albinism, too.
What kind of vision do people have who have albinism?
People who have albinism see less clearly than people who are fully sighted.  They can see things up close better than far away.  This is called being near-sighted or myopic.   Their eyes may be shaped more like a football than like a round ball.  This is called astigmatism.  Astigmatism makes things look blurry and makes it hard to see in bright light.  Wearing glasses can help make it easier to see when people are near-sighted and have astigmatism.
Glasses will not be helpful for other parts of albinism.  People who have albinism have less color in the back of their eyes, the part called the retina.  They have less color in their irises, the colored part on the outside of the eye.  Too much light can get through their irises.  Bright light makes it hard for people who have albinism to see. 
The eyes tend to move back and forth quickly without the person who has albinism meaning to move them.  The back and forth movement is called nystagmus. 
The eye muscles of a person who has albinism may also be affected.  The eyes may not move together even though the person is trying to use them together.  When the eyes move in different directions, it is called strabismus. 
What will help you see if you have albinism?

1.  Keep the light behind you or next to you.  If you are facing the light, it will be hard to see people or things between you and the light.  Try to get indoor lights that you can make dimmer or brighter for yourself.  Wear sunglasses or a hat with a dark brim when the sun is bright.

2.  Make things look bigger.  The easy way to make things look bigger is to move them close to you or move yourself close to them.  Your glasses will help you to see things up close.  Use a bookstand to hold your book so that you can sit up to look at it up close.  Maybe a magnifier will help you see things close to you.  You can make print and pictures bigger on the computer or with a copy machine.

3.  It may help you to have light letters on a dark background.  You can use a CCTV or a computer to make letters light and background dark. 

4.  Pictures and books with big differences between the colors will help.  If the colors are like each other, it will be hard to see the difference.  If the colors are bright, it will be easier.  If lines are thick, it will also be easier to see.  Big differences like this are called “high contrast.”

5.  Sometimes it will help to have a frame around the words you are looking at.  You may want to hold something with a straight edge, like a black piece of paper or a dark ruler, under the words you are reading.

6.  If it is hard for you to see the white board at school or to see things in a museum or on the wall in a restaurant, a pair of binoculars or a monocular telescope may help.

7.  You may get tired more quickly than fully-sighted people do when you use your eyes a lot.  If you get tired of looking at things, do something that does not require looking for a while.  It will not damage your eyes if they get tired, but you will learn better if you rest them before they are tired.

8.  If you have oculo-cutaneous albinism, it is important to take good care of your skin.  The sun will give you skin cancer when you are older if you get sunburned often when you are young.  Wear clothes that will keep the sun off your skin and use sunscreen lotion or spray to keep from getting burned.  Wear a hat to protect your face, ears and neck.

 


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