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Usher Syndrome

Read this page if your child has a hearing loss and also has a vision or seeing problem. That could mean he has Usher Syndrome.

What is Usher Syndrome?
Usher Syndrome (UH-shur SIN-drum) is a disease that makes people lose some of their hearing and some of their vision. The vision loss is caused by a disease called Retinitis Pigmentosa. Doctors call this disease RP for short.

People with Usher Syndrome are usually born with some hearing loss.
The amount of hearing loss is different for different people:

  • It can be mild, moderate, severe, or profound.
  • It can get worse over time. This is called progressive hearing loss. Or the hearing loss can stay the same.

People with Usher Syndrome usually lose their sight later in life.
People with Usher Syndrome lose their night vision first. That means they have trouble seeing in the dark.

It usually starts to happen when the person is a teenager. But it can also happen earlier, during childhood.

Not everyone loses the same amount of seeing and hearing

People with Usher Syndrome usually don't lose all of their hearing and sight. But they usually have lost a lot of their sight by the age of 30 or 40. This kind of sight loss is called being legally blind.

Being legally blind doesn't mean a person can't see anything. It means they can only see what is right in front of them, and close to their eyes. They can't see things on the side, or things that are far away. They might be able to read regular books. Or they might need to learn Braille.

What causes Usher Syndrome?
Usher Syndrome is a genetic disease. That means you're born with it.

To be born with Usher Syndrome, a child must get the gene for Usher Syndrome from both parents. This does not mean that both parents have to have Usher Syndrome. If neither parent has Usher Syndrome, but both parents are carriers of the gene, when the two carriers combine, their child might be born with Usher Syndrome. Both girls and boys can have Usher Syndrome.

Next: The signs of Usher Syndrome

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