Living with Subepithelial mucinous corneal dystrophy
A very rare inherited eye condition with painful surface erosions of the cornea in childhood and slowly worsening vision.
Understanding Subepithelial mucinous corneal dystrophy
The cornea is the clear front of the eye. People have frequent repeated erosions (breaks) on its surface, starting in the first ten years of life. Vision slowly gets worse over time.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes:
- Repeated cornea surface erosions
- Vision that slowly worsens
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
Changes in genes (variants) cause this condition. It is autosomal dominant, meaning one changed copy of a gene can cause it. GARD doesn't list which gene.
Also known as: smcd
Patient organizations
- Corneal Dystrophy FoundationSubepithelial mucinous corneal dystrophy · United States
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Perspectives from people navigating life with Subepithelial mucinous corneal dystrophy.
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