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Health library/Usher syndrome

Rare sensory disorders / RARE CONDITION

Usher syndrome

Also known as: Deafness-retinitis pigmentosa syndrome, Graefe-Usher syndrome, Hallgren syndrome, Retinitis pigmentosa-deafness syndrome, Usher's syndrome

Usher syndrome combines hearing impairment with progressive retinal vision loss. Some forms also affect balance, and support needs change as vision declines.

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What you may notice

Symptoms can overlap with other conditions and vary between people.

  • Hearing loss
  • Poor night vision
  • Progressive peripheral vision loss
  • Balance difficulties in some types

Understanding care

Clinical care may include coordinated hearing and retinal assessment with communication and mobility support. A qualified clinician decides which investigations and options fit the individual situation.

When to seek help

Seek specialist review for changing vision or hearing function. Sudden vision loss, a painful eye or an acute neurological change requires urgent assessment.

For severe breathing difficulty, collapse, suspected stroke, or another emergency, call local emergency services immediately. In India, call 112.

Read the medical sources

These sources support the educational article and offer more detail.

Educational reading · Updated 6 October 2026

Prepared from the linked sources. This summary has not had an independent clinician review. A qualified clinician can assess symptoms and explain which information applies to you.

A child and a caring grown-up reading a picture book together

LITTLE PEOPLE. BIG FEELINGS.

It’s okay to have
a lot of questions.

A doctor visit or an unfamiliar health word can feel scary. You can ask a trusted grown-up to help you understand, one small question at a time.

01

Say how you feel.

“I feel worried” is a good place to start.

02

Ask for simple words.

“Can you explain that in a way I understand?”

03

Bring someone you trust.

A caring adult can help you ask and listen.

For children and their grown-ups. This illustration explains a conversation, not a diagnosis. An adult should seek qualified care for a child who is unwell.

Usher syndrome — First AID health library