Living with Iridocorneal endothelial syndrome
A group of eye conditions, usually in one eye, with changes to the iris, a swollen cornea, and glaucoma.
Understanding Iridocorneal endothelial syndrome
ICE syndrome is more common in women than men and usually affects only one eye. It includes three closely linked conditions: Cogan-Reese syndrome, Chandler's syndrome, and essential (progressive) iris atrophy. It is usually seen in adults. Glaucoma is a disease that can cause serious vision loss when fluid cannot drain properly from the eye.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Glaucoma
- Swelling of the cornea
- Less clear vision
- Slow loss of vision over time
- Wearing away of the iris (iris atrophy)
- Pupil pulled out of place
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
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 rare disease patient organizations for support
- 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
The cause is unknown. One theory is that a virus triggers swelling of the cornea.
Also known as: ice (irido-corneo-endothelial) syndrome; ice (iridocorneal endothelial) syndrome; ice syndrome; irido-corneo-endothelial syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Iridocorneal endothelial syndrome.
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