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FEVR or Familial Exudative Vitreo-Retinopathy

What is FEVR?
FEVR is pronounced as, “fever,” but it has nothing to do with being overly warm due to illness.  It is an eye condition that affects the retina and the vitreous.  The retina is in the back of the eye.  It holds all the nerves that collect vision information from the light coming into the eye.  The vitreous is the clear gel inside the eye.
Familial means that this condition comes from the family.  Exudative means that there is liquid leaking from the blood vessels into the back of the eye.  Vitreo-Retinopathy means that this is something not working in the vitreous and the retina.  The liquid leaking from the blood vessels is bad for the retina and vitreous.  It may push the retina away from the back of the eye.  When that happens, no vision comes from that part of the retina.
The blood vessels may grow wildly.  They may pull the retina away from the back of the eye.  Thin skin may grow in the vitreous and pull at the retina as well.
Some people who have FEVR are born with a folded retina.  The retina folds over itself and does not work.  If doctors see the fold early, they can fix it.  Most of the time, doctors do not see the fold until it is too late to fix it.

What causes FEVR?

FEVR 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 parent’ 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 blues eyes hidden in their bodies.
Parents who have children who have FEVR may not have known that they had it in their bodies.  It was hidden.  They may not have known that it was in their body cells until they had a child who has FEVR.  Or they may remember that someone else in the family had FEVR,


What kind of vision do people have who have FEVR?

Each person who has FEVR may have a different amount of vision.   Even brothers and sisters who have FEVR may have different vision.  When FEVR starts to make a vision problem before a person is ten years old, the person may become totally blind.  Other people who have FEVR may not have any vision loss.  Most people who have FEVR have some vision loss but are not totally blind.
Both eyes usually lose vision if a person has FEVR.  Each eye may lose a different amount of vision.  One eye may see better than the other.
People who have FEVR lose vision for many years.  When some of them reach twenty years of age, the vision loss stops.  Their vision stays the same until they get very old.  People, who have FEVR who began losing vision before they were ten years old, keep losing vision after they reach twenty.
People who have FEVR may also get cataracts.  Some of them may have a growth between the lens and iris.  The growth keeps the iris from opening up the pupil.  Both of these problems can be fixed by doctors.


What will help you if you have FEVR?

  1. Doctors can be helpful to people who have FEVR.  It is important to see the eye doctor often.  If vision loss happens all of a sudden, it is very important to see a doctor right away.  A doctor may be able to save the retina.  Surgery and medicine may help solve problems from FEVR.
  2. If you are totally blind or if you began losing vision before you were ten, you may want to learn skills for school that blind people use.  For example, you may want to use braille for reading and writing.  You may want to learn about computer software that is helpful for blind people.  You may want to learn to use a long cane for travel.
  3. If you have vision, it may help you to see if things are 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.  A monocular telescope may help you see things far away.
  4. You may like bright light.  It may help you see.  Try to get lights that you can make dim or bright yourself.
  5. It is hard to have a condition that does not stay the same.  You may want to find someone to talk to about how hard it is.  Your doctor, your parents or your teacher may be able to help you find a therapist who is helpful.

 

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