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Stickler's Syndrome

What is Stickler’s syndrome?
People who have Stickler’s syndrome often have faces that look different from most people.  They have myopia.  They are called nearsighted.  You can read about myopia on this website. 

Sometimes people who have Stickler’s syndrome get cataracts.  You can read about cataracts on this website, too. 

The retina in the eyes of people who have Stickler’s syndrome sometimes comes off of the back of the eye.  The retina takes in the light through the pupil of the eye.  It sends the light to the brain through the optic nerve.  The eyes of people who have Stickler’s syndrome are very long.  Their retinas are not as long as their eyes.  Sometimes they come off the back of the eye.  This is called a retinal detachment.  If the retina comes off the back of the eye, there is no way for vision messages to get to the brain.  There is no vision.  You can read about retinal detachment on this web site.

What causes Stickler’s syndrome?
Stickler’s syndrome 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 Stickler’s syndrome may not have known that they had it in their bodies.  It was hidden.  They may not know that Stickler’s is in their body cells until they have a child who has it.  Or they may remember that someone else in the family had Stickler’s syndrome.

What kind of vision do people have who have Stickler’s syndrome?
Some people who have Stickler’s syndrome see best when things are close.  When things are far away, they look very blurry.  Some people who have Stickler’s syndrome have trouble seeing in bright light.  Others cannot see at all.

What will help you if you have Stickler’s syndrome?
1.  Wear glasses if they help you see better.
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.  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.  A monocular telescope may help you see signs outside and the board in class.  You can use it to see animals in the zoo and things in a museum.
4.  Bright light may help you see better.
5.  You may want to learn braille.  You can read braille while you have vision.  You can read braille if you lose your vision.
6.  If you bump into things and trip on things, you may want to learn to use a white cane.  The cane can help you find things that you want to find.
7.  If you lose more vision, you may feel sad about it.  Sometimes it helps to talk to someone about sad feelings.  Find someone you like to talk to about how it feels to lose vision. 

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