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Leber's Congenital Amaurosis

What is Leber’s congenital amaurosis?
Dr. Leber was an ophthalmologist, or eye doctor, who first wrote about this eye condition.  Congenital means that is happens at birth or before birth.  Amaurosis is a Latin word for “blind.”  Not everyone who has Leber’s congenital amaurosis is blind, but all of them have a visual impairment.

What causes Leber’s congenital amaurosis?
Leber’s Congenital Amaurosis 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.  The father may have brown eyes, and 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 Leber’s congenital amaurosis may not have known that they had it in their bodies.  It was hidden.  They may not have known that it was in their body cells until they had a child who has Leber’s congenital amaurosis.  Or they may remember that someone else in the family had Leber’s congenital amaurosis.


What kind of vision do people have who have Leber’s congenital amaurosis?
Vision is different for each person who has Leber’s congenital amaurosis.  Some people can see a lot, some a little, and some are blind.

People who have Leber’s congenital amaurosis and can see usually see better in the distance than up close.  They are missing detail vision.  They may see with the vision on the sides of their eyes instead of in the center.  Or they may only see with the center of their eye and not on the sides.  When the light is dim, they have a hard time seeing.  They may not see colors.  They may miss details.  They may look at something from the side instead of forward.  Some people may tell them to look at something in front of them.  These people do not understand that some people who have Leber’s congenital amaurosis need to look from the side.
Sometimes people who have Leber’s congenital amaurosis have other problems.  Some of them may not be able to learn everything.  Most of them like to press their eyes.  Their eyes will look strange if they press them too much.  People who have Leber’s congenital amaurosis may lose more vision as they get older.  The loss is slow, so they have time to get used to it.
Sometimes people who have Leber’s congenital amaurosis have cataracts.  You can read about cataracts on this website, too.  Sometimes they have nystagmus.  You can look up nystagmus here, too.

What will help you if you have Leber’s congenital amaurosis?

Here are some ideas that help people who have Leber’s congenital amaurosis.  Try them out.  You will be the best one to decide which ideas work for you.

1.  Let people know if you need to look at something from the side of your vision.
2.  Glasses may not help you see better.  Wearing sunglasses or plain glasses may help you remember not to press your eyes.  Having a secret word that someone can say when you press your eyes can also help you remember.  Choose a word, and only tell a few people that it means, “Stop pressing your eyes.”  Then you will have a secret code to keep your eyes looking good.
3.  If you have vision, wear sunglasses and a hat in bright light.  It will be easier to go into dimmer light if you do.
4.  If you have vision, it may help you to see if things are bigger.  The easy way to make things look bigger is to move them close to you or move yourself close to them.  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, with a CCTV or with a copy machine. 
5.  It is a good idea to learn braille.  If you lose more vision and if you are blind, you can read and write braille.  You can use braille all your life.
6.  Learn to use a white cane.  It will help you not bump into things or trip.  It will help a lot at night and in places with dim light.  If you lose more vision or if you are blind, it will help you all your life.
7.  If you have vision, you can make the background of a computer or CCTV dark and the letters light.  That may help you read.
8.  If you have vision, sit or stand so that light is behind or next to you.  Try to get lights that you can make bright or dim yourself.
9.  If you have vision, a monocular telescope may help you see far away.  You can use it to read signs outside and the board in school.
10.  If you have vision, you can also use a monocular telescope to see a wider view.  Hold it backwards up to your eye. Things will look small, but you will see a wider field.  This works best with a monocular that is made to make things look two to four times bigger.

 

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