Living with X-linked endothelial corneal dystrophy
A rare eye condition in males with clouding of the cornea from birth and blurred vision.
Understanding X-linked endothelial corneal dystrophy
It affects the back layer of the cornea. GARD describes a ground-glass cloudiness or hazy cornea that blurs vision in males. Signs appear in the newborn period or infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cloudy cornea
- Reduced sharpness of vision
- Band-shaped corneal changes (band keratopathy)
- Quick, jerky eye movements (nystagmus)
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 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 says changes in genes (variants) cause this condition and it follows X-linked inheritance. It doesn't name a gene.
Also known as: corneal dystrophy, endothelial, x-linked, x-linked dominant; x-linked endothelial dystrophy of cornea; xecd
Patient organizations
- Corneal Dystrophy FoundationX-linked endothelial corneal dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with X-linked endothelial corneal dystrophy.
Explore research for X-linked endothelial corneal dystrophy
Explore actively recruiting X-linked endothelial corneal dystrophy studies with HealthSpark.
Find actively recruiting studies for X-linked endothelial corneal dystrophy 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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