Living with Usher syndrome type 1
A genetic condition with hearing loss from early life, balance problems, and vision loss that worsens over time.
Understanding Usher syndrome type 1
Signs often show in infancy. Retinitis pigmentosa slowly breaks down light-sensing cells in the retina. Night vision goes first, then blind spots can grow and merge into tunnel vision. Cataracts can also affect vision.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hearing loss from the inner ear
- Night blindness
- Loss of side (peripheral) vision
- Balance problems
- Delayed speech and language
- Delayed motor skills
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
Usher syndrome type 1 is inherited in an autosomal recessive way. A child inherits a changed copy of the gene from each parent.
Also known as: retinitis pigmentosa and congenital deafness; us1; ush1; usher syndrome, type 1
Patient organizations
- Foundation Fighting BlindnessUsher syndrome type 1 · United States
- Usher Syndrome CoalitionUsher syndrome type 1 · United States
- Prevent Blindness AmericaUsher syndrome type 1 · United States
You are more than your diagnosis
Perspectives from people navigating life with Usher syndrome type 1.
Explore research for Usher syndrome type 1
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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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