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Rod-cone Dystrophy

What is rod-cone dystrophy?
There are two kinds of cells in the back of the eye called rods and cones.  They gather vision information from the light that comes into the eye through the pupil.  The cones are in the center of the back of the eye.  They gather information about details and color.  They work best in bright light.  (It may help you remember to think of “cones” and “color” both starting with “c.”) The rods are all around the rest of the back of the eye.  They gather information about things that move and things that are on the sides, above and below the person.  They work best in dim light.  People who have rod-cone dystrophy lose the use of the rods and cones. 

What causes rod-cone dystrophy?
There are many different kinds of rod-cone dystrophy.  Some of them are inherited.  That means that a baby is born with a rod-cone dystrophy, even if it does not show up at first.  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 of some children who have rod-cone dystrophy may not have known that they have it in their bodies.  It was hidden.  They may not know that rod-cone dystrophy is in their body cells until they have a child who has it.  Or they may remember that someone else in the family had rod-cone dystrophy.

Doctors do not know what causes other kinds of rod-cone dystrophy.

Rod-cone dystrophy often comes with other problems.  There are many syndromes that include it.  A syndrome is a set of problems that go together.  Sometimes doctors can name what syndrome people have when they have rod-cone dystrophy, and sometimes they cannot.

What kind of vision do people have who have rod-cone dystrophy?
People who have rod-cone dystrophy have different kinds of vision.  Sometimes the cones stop working first.  That means that detail and color vision are lost first.  Sometimes the rods stop working first.  That means that seeing at night, seeing to the sides and seeing things that are moving is lost first.

What will help you if you have rod-cone dystrophy?
If the rods in your eye are not working, here are some ideas that may help you.  Try them out, and use the ones that work for you.
1.  Glasses may be helpful.  Your doctor can tell you what glasses are right.  You can have them made just for you.
2.  Wear sunglasses and a hat in bright light.  It will be easier to go into dimmer l ight if you do.
3.  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, with a CCTV or with a copy machine. 
 “tunnel” that you see in.
5.  Learn to use a white cane so that you will not bump into things or trip.  At night or in a dark place it will help a lot to have a white cane.
6.  You may want to learn braille.  If you lose more vision, you will still be able to read.  You can read braille all of your life. 
7.  A monocular telescope may help you see things far away.  It may help you read signs outside and the board at school.
8.  If you like to press your eyes, but you do not want them to look strange, try this idea. Choose a special 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.
9.  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.
If the cones in your eyes are not working, here are some ideas that might help you.  Try them out, and use the ones that are helpful.

  1. Wear sunglasses and a hat with a dark brim if the light is too bright for you.
  2. Try to get lights indoors that you can make light and dim for yourself.
  3. You may want to use a computer or a CCTV to read.  It may help to make the background dark and the letters white.  Then there will be less light.
  4. Try making things bigger.  It may help, and it may not.  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. 
  5. 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.
  6. It may help to make the background plain and dark when you look at something light.  It may help to make the background plain and light when you look at something dark.  This is called “high contrast.”
  7. You may want to learn braille for reading.  You may want to use touch to look at things closely.
  8. Listening may be a good way for you to learn.
  9. If you look at things from the side of your eye, you may want to tell people that.  Sometimes people may think that you are not looking at what they want you to look at.  They may not know that you look from the side of your eye best.
  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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