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Septo-optic dysplasia (De Morsier Syndrome)

What is septo-optic dysplasia?
Septo-optic dysplasia is a vision condition and a brain condition.  The eye part of the syndrome is called optic nerve hypoplasia.  People who are born without the optic nerve growing have optic nerve hypoplasia.  If the optic nerve did not grow, vision messages do not get to the brain.  The brain part is also a lack of growth.  The middle part of the brain is called the septum pellucidum.  It does not grow in people who have septo-optic dysplasia. 

Other things in the brain do not work right either.  The pituitary gland does not make the hormones that help people grow.  People who have septo-optic dysplasia may be short.  They may be heavier than other people.  They may have trouble learning some things.  They may have trouble using both hands to do jobs like twisting the lid off of a jar or tying shoes.  They can’t help it.  It’s part of septo-optic dysplasia.

What causes septo-optic dysplasia?
No one knows what causes optic nerve hypoplasia or septo-optic dysplasia.  Some people who have it have mothers who were very young when they were born.  More children are born with septo-optic dysplasia in areas where food is grown.  Maybe the poison used to kill bugs on farms also makes the optic nerve stop growing.  Doctors do not know for sure.

What kind of vision do people have who have septo-optic dysplasia?
Some people who have septo-optic dysplasia can see a lot.  Some cannot see at all.  The ones who can see sometimes have a hard time understanding what they see.  This is called “perceptual problems.”

Sometimes people who have septo-optic dysplasia can see from part of their retina and not from other parts.  Some of the vision messages get to the brain, but not all of them.  This is called “field loss.”  No one can see everything at once.  People who are fully sighted have to turn to see what is behind them.  People who have a field loss have to move to see things in the place where they have the field loss.

What will help you if you have septo-optic dysplasia?

  1. Be sure to take the medicine your doctor gives you.  It will help you grow.
    2.  Bright light may help you see.  Too much light may make it hard to see.  Try to get lights that you can make dim or light.  Sit or stand so that the light is behind you or next to you.
    3.  Wear a hat and sunglasses when it is bright outside.
    4.  Sometimes making the background dark and the letters light will help.  You can do this on a computer or on a CCTV.
    5. When you get tired of using your eyes, rest.
    6.  You may want to learn braille.  Using touch and listening to learn may help you.
    7.  Using a white cane outdoors may help you.  The cane can tell you when there are steps or a curb.  It can let you know where things are so that you do not bump into them.
    8.  It may help to make things big.  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.   Using a monocular telescope may help for looking at things far away.
    9.  Put things on a plain background when you want to see them.  It will be easier to see where the things are.  Make sure there is space between the things you are looking at.  If you are reading, make the letters and lines of words have space between them.

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