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Retinoblastoma

What is retinoblastoma?
When there is a tumor in the eye, it is called retinoblastoma.  The tumor and the eye have to be taken out.  A plastic eye is used to help the person’s face grow to look like other people.  Before the tumor is taken out, the pupil of the eye looks white.  The two eyes are not moving in the same way as each other.  This is called strabismus.  Sometimes people who have retinoblastoma also have other problems.  Often they are very smart.  They do well in school.

What causes retinoblastoma?
The inside of the back of the eye is called the retina.  It holds the nerves that get light through the pupil.  The nerves send visual messages to the brain.  Sometimes a tumor grows on the retina.  It is not good for the retina.  It keeps growing unless the doctors stop it.  It is called retinoblastoma.

Retinoblastoma can be 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 retinoblastoma may not have known that they have it in their bodies.  It was hidden.  They do not know retinoblastoma is in their body cells until they have a child who has it.  Or they may remember that someone else in the family had retinoblastoma.

Sometimes retinoblastoma shows up in only one person in the family.  No one knows why this happens.

What kind of vision do people have who have retinoblastoma?
Some people who have retinoblastoma have it in only one eye.  They may see less in that eye.  They see fine in the eye that does not have retinoblastoma.

Some people have retinoblastoma in both eyes.  After the doctor gets rid of the tumors in their eyes, they can see better.  The tumor blocked their vision.  They still may not see as well as people who are fully sighted.  Their vision may be blurry.  Bright light may hurt their eyes.

Sometimes doctors take out the eyes that have tumors.  The tumor will grow too much if they don’t.  Tumors are dangerous.  If only one eye is gone, people can still see with the eye that is left.  If both eyes are gone, there is no more vision.

What will help you if you have retinoblastoma?

  1. The doctor will know the best way to help you get rid of the tumor.
  2. Use sunglasses and a hat in bright light.  You may want to use them inside, too.
  3. Make things 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.   Using a monocular telescope may help for looking at things far away.
  4. You may want to learn to use a white cane.  It will help you stop bumping into things and tripping.
You may want to learn braille.   You can also learn from listening.

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