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Retinitis Pigmentosa

What is retinitis pigmentosa?
Retinitis pigmentosa makes people who have it lose vision around the edges of their retinas.  The vision at the edge of the retina is called peripheral vision.  People who have retinitis pigmentosa sometimes have myopia as well.  You can read about myopia on this website.  You can read about other problems that go with retinitis pigmentosa sometimes, too.  They are Lawrence-Moon-Biedel syndrome, Usher’s syndrome, and Leber’s congenital amaurosis.  People who have retinitis pigmentosa may also have nystagmus.  You can read about nystagmus on this website.

What causes retinitis pigmentosa?
Retinitis pigmentosa happens when both parents have it hidden in the cells of their bodies.  It is passed from the parents to the child.  The parents might not have retinitis pigmentosa themselves.  They may not even know that retinitis pigmentosa is in their cells until they have a child.  Or they may remember that someone in their family had retinitis pigmentosa, too.

What kind of vision do people have who have retinitis pigmentosa?
People who have retinitis pigmentosa see things from the center of their eyes.  They may see details in good light.  They have trouble seeing anything in dim light.  They may not notice things moving to the side.  They may bump into things or trip on things.  They do not see things to the side or down below or up above.  Sometimes they feel like they are looking through a tube or a tunnel.  People call this “tunnel vision.”

People who have retinitis pigmentosa sometimes have myopia as well.  They can see things better when they are up close. 

It may take longer for people who have retinitis pigmentosa to see again when they go from bright light to dim light or from dim light to bright light.

Most people who have retinitis pigmentosa like to press their eyes.  If they press their eyes a lot, their eyes will look strange and may be injured.

People who have retinitis pigmentosa lose more vision as they grow up.

What will help you if you have retinitis pigmentosa?
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 light if you do.
3.  You may want to 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. 
4.  Do not make things too big.  If they are too big, they will be outside the “tunnel” that you see in.  If you want to have a wider view of things, you can use a monocular telescope to do that. Hold the telescope backwards.  Things will look small, but more will fit into the view.  It is best to use a telescope that is made to make things look two to four times bigger for this.
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.

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