Living with Usher syndrome type 2
A genetic condition with hearing loss from birth and vision loss that usually starts in the teen or adult years.
Understanding Usher syndrome type 2
Vision loss usually begins in adolescence or adulthood. Night vision goes first, then side vision narrows. Hearing loss ranges from mild to severe and mainly affects high tones. Unlike other types, people with type 2A do not have balance problems from the inner ear.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hearing loss, mainly high tones
- Night blindness
- Loss of side (peripheral) vision
- Nearsightedness (myopia)
- Clouding of the eye lens (cataract)
- Tiredness and trouble sleeping
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
Type 2A is caused by changes in the USH2A gene. A child inherits a changed copy of the gene from each parent (autosomal recessive).
Also known as: ush2; usher syndrome type ii
Patient organizations
- Foundation Fighting BlindnessUsher syndrome type 2 · United States
- Usher Syndrome CoalitionUsher syndrome type 2 · United States
You are more than your diagnosis
Perspectives from people navigating life with Usher syndrome type 2.
Explore research for Usher syndrome type 2
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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