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A 10-year-old with congenital profound hearing loss begins to have difficulty seeing at night. Ophthalmologic exam reveals retinitis pigmentosa. He also has vestibular dysfunction.

AR; multiple genes

  • Type 1: MYO7A, USH1C, CDH23, PCDH15, USH1G - most severe
  • Type 2: USH2A (most common), ADGRV1, WHRN - moderate
  • Type 3: CLRN1 - progressive

Types:

TypeHearing LossVestibularRP Onset
1Profound congenitalAbsentFirst decade
2Moderate-severe congenitalNormalSecond decade
3ProgressiveVariableVariable
  • Sensorineural hearing loss
  • Retinitis pigmentosa (progressive blindness)
  • Vestibular dysfunction (type 1, variable in type 3)
  • Leading cause of deaf-blindness
  • Audiometry/ABR confirms sensorineural hearing loss; newborn hearing screen typically abnormal in types 1 and 2
  • Ophthalmologic evaluation with electroretinogram (ERG) and dilated fundus exam to detect retinitis pigmentosa, often before symptoms
  • Vestibular testing: areflexia supports type 1; vestibular function is typically normal in type 2
  • Molecular confirmation: multigene panel (MYO7A, USH2A, CDH23, PCDH15, CLRN1, and others), with type correlating to gene and phenotype
  • Hearing rehabilitation: hearing aids; early cochlear implantation is favored in profound type 1 loss
  • Vision surveillance: serial ophthalmologic exams; low-vision services, UV protection, and vitamin A supplementation in selected cases per specialist guidance
  • Vestibular/balance support and fall-prevention strategies in type 1
  • Early communication-modality planning and deaf-blind support services as vision declines

"USHER": UnSteady (balance issues), HEaring loss, Retinitis pigmentosa. The three cardinal features are spelled out in the name.

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