Living with Familial exudative vitreoretinopathy
An inherited eye condition in which blood vessels do not fully form at the edge of the retina, which can lead to vision loss.
Understanding Familial exudative vitreoretinopathy
Blood vessels do not fully develop at the outer edge of the retina, the light-sensing tissue at the back of the eye. Symptoms vary widely, even within a family. In many people the changes never cause vision problems. In others, leaking vessels, fluid under the retina, or retinal detachment can lead to vision loss.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Reduced clarity of vision
- Blood vessels missing at the retina's edge
- Fluid under the retina
- Retinal fold or detachment
- Eyes that do not line up (strabismus)
- White pupil (leukocoria)
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 brain and nervous system 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.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); 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 Pediatric Retinal Research Foundation 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
Changes in genes cause this condition. It can be autosomal dominant, autosomal recessive, or X-linked. GARD does not name the gene.
Also known as: criswick-schepens syndrome; exudative vitreoretinopathy; fevr; fevr - familial exudative vitreoretinopathy
Patient organizations
- Pediatric Retinal Research FoundationFamilial exudative vitreoretinopathy · United States
- Prevent Blindness AmericaFamilial exudative vitreoretinopathy · United States
- The Vision of Children FoundationFamilial exudative vitreoretinopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial exudative vitreoretinopathy.
Explore research for Familial exudative vitreoretinopathy
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