Living with Euryblepharon
A rare eyelid difference present at birth in which the eye opening is wider and the eyelids are shorter.
Understanding Euryblepharon
It affects both eyes. The outer corner of the eye may be out of place and the lower lid may turn outward. It may happen on its own or with other eye or body differences. In severe cases, the eye may not close fully, and surgery may be needed.
Signs & symptoms
GARD doesn't list specific symptoms here. Its summary describes:
- Wider eye openings in both eyes
- Shortened eyelids
- Outer eye corner out of place
- Lower eyelid turned outward
- Eye not closing fully in severe cases
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
GARD says the cause is unknown, though it lists changes in genes. It does not name a specific gene.
Also known as: kabuki syndrome eyelids
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 Euryblepharon.
Explore research for Euryblepharon
Explore actively recruiting Euryblepharon studies with HealthSpark.
Find actively recruiting studies for Euryblepharon 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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