Living with Epithelial recurrent erosion dystrophy
A rare eye condition with repeated painful scrapes on the clear front surface of the eye, starting in childhood.
Understanding Epithelial recurrent erosion dystrophy
It causes repeated episodes of corneal erosion (breakdown of the surface layer), starting in childhood, without other diseases. Vision is sometimes affected. Over time, some people have scarring on the cornea and slowly worsening vision.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated corneal erosions
- Eye pain
- Blurred vision
- Sensitivity to light (photophobia)
- Scarring on the cornea
- Slowly worsening vision
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 COL17A1 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 Corneal Dystrophy Foundation
- 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 the COL17A1 gene cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it.
Also known as: corneal erosions, recurring hereditary; dystrophia helsinglandica; dystrophia smolandiensis; epithelial recurrent erosion dystrophy of cornea; ered; recurrent hereditary corneal erosions
Patient organizations
- Corneal Dystrophy FoundationEpithelial recurrent erosion dystrophy · United States
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