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Signs of Usher Syndrome

Get your child tested for Usher Syndrome if he starts having trouble seeing things.

Even if your child is born with Usher Syndrome, you may not know it right away. Why? Because your child may be born with a hearing loss. But he may not lose his sight until later.

But special testing can be done to check your child's eyes. This will let them know before the child has a vision problem.

These things may mean your child is losing his sight:

  • trouble seeing things in the dark or in dim light
  • a lot of accidents, like bike accidents or bumping into people
  • getting worse at understanding sign language (if your child uses sign language)
  • sitting very close to the TV (many parents think this is because he is deaf!)
  • holding things very close to see them
  • trouble balancing, like not being able to walk across a balance beam at the playground

If you think your child has Usher Syndrome
If you think your child has Usher Syndrome, get your child tested for it. There's no cure for Usher Syndrome. But knowing if your child has it can help you plan for the future better.

  • They can figure out when and how to teach the child special things (like Braille) so that he can still succeed when he starts to lose his vision.
  • Some parents choose to teach their child sign language, because speech reading will not be easy if seeing is hard.
  • Other parents may choose a cochlear implant, because they want to make hearing things as good as possible.

So if your child has some of these signs, don't wait:

  • Tell your child's doctor right away.
  • Don't let your doctor tell you not to worry. You have a right to know.
  • Take your child to an eye doctor. The doctor is called an ophthalmologist (opp-thah-MOL-o-jist). The ophthalmologist will do a test called an electroretinogram to find out if your child has Usher Syndrome. Ask the ophthalmologist if your child should see another kind of doctor, called a retina specialist.

Next: How to help your child

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National Institute on Deafness and Other Communication Disorders

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