Living with Wagner disease
An inherited eye condition that causes vision loss that worsens over time, starting in childhood.
Understanding Wagner disease
Eye problems typically begin in childhood, though vision loss may not be obvious at first. The retina becomes thin and may detach. The eye's gel becomes watery, and cataracts develop. Some people have nearsightedness, night blindness, or a narrowed field of vision. GARD says vision can range from near normal to complete loss in both eyes.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Reduced clarity of vision
- Nearsightedness (myopia)
- Night blindness
- Cataracts
- Retinal detachment
- Breakdown of the retina and choroid
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 eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in VCAN are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Prevent Blindness America
- 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
Wagner disease is caused by changes in the VCAN gene. A child can get it from one parent with the changed gene (autosomal dominant).
Also known as: dominant hyaloideoretinal dystrophy of wagner; erosive vitreoretinopathy; hyaloideoretinal degeneration of wagner; vcan-related vitreoretinopathy; vitreoretinal degeneration, wagner type; wagner syndrome
Patient organizations
- Prevent Blindness AmericaWagner disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Wagner disease.
Explore research for Wagner disease
Explore actively recruiting Wagner disease studies with HealthSpark.
Find actively recruiting studies for Wagner disease with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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