Living with Congenital hereditary endothelial dystrophy type I
A rare eye condition with cloudy, thickened corneas from birth or infancy and blurred vision, without shaky eye movements.
Understanding Congenital hereditary endothelial dystrophy type I
The corneas have a diffuse ground-glass look and are markedly thickened from birth or infancy. People have blurred vision but do not have the shaky eye movements (nystagmus) seen in type II.
Signs & symptoms
Symptoms vary from person to person. GARD's summary lists:
- Cloudy, ground-glass cornea
- Thickened cornea
- Blurred 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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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
GARD doesn't describe a cause for this condition yet.
Also known as: autosomal dominant ched; autosomal dominant congenital hereditary endothelial dystrophy; ched1; chedi; congenital hereditary endothelial dystrophy type 1
Patient organizations
- Corneal Dystrophy FoundationCongenital hereditary endothelial dystrophy type I · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital hereditary endothelial dystrophy type I.
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