Living with Usher syndrome
A genetic condition that causes hearing loss and gradual vision loss from retinitis pigmentosa, and can affect balance.
Understanding Usher syndrome
Vision loss comes from retinitis pigmentosa, in which light-sensing cells at the back of the eye slowly break down. Night vision goes first, then side vision narrows. There are three main types, I, II, and III, which differ in hearing loss, balance problems, and when signs start. Many people keep some central vision.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hearing loss from inner ear changes
- Night blindness
- Loss of side (peripheral) vision
- Clouding of the eye lens (cataract)
- Balance problems
- Nearsightedness (myopia)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include ear, nose, and throat specialists, eye disease specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation Fighting Blindness and Usher Syndrome Coalition may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Foundation Fighting Blindness, Usher Syndrome Coalition
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Foundation Fighting Blindness and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says a child inherits a changed copy of a gene from each parent (autosomal recessive). The three types are divided into subtypes by their genetic cause.
Also known as: retinitis pigmentosa-hearing loss syndrome; ush; usher syndromes; usher's syndrome
Patient organizations
- Foundation Fighting BlindnessUsher syndrome · United States
- Usher Syndrome CoalitionUsher syndrome · United States
- Usher 1F CollaborativeUsher syndrome · United States
- Prevent Blindness AmericaUsher syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Usher syndrome.
Explore research for Usher syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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