Living with Congenital stromal corneal dystrophy
An inherited eye condition in which the clear front of the eye is cloudy from birth, affecting vision.
Understanding Congenital stromal corneal dystrophy
People have cloudy patches in the thickest layer of the cornea, usually in both eyes from birth or soon after. The cornea may be thicker than normal with an uneven surface. This can lower sharpness of vision, and without treatment vision can worsen over time. Eyes that do not line up (strabismus) and lazy eye (amblyopia) are common.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cloudy cornea (corneal dystrophy)
- Crossed eyes (strabismus)
- Lazy eye (amblyopia)
- Blurry vision
- Involuntary eye movements (nystagmus)
- Sensitivity to light (photophobia)
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.
- 3Consider genetic testing
Changes in DCN are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
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
It is caused by changes in the DCN gene. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: congenital hereditary stromal dystrophy; cscd; decorin associated congenital stromal corneal dystrophy; dystrophia corneae parenchymatosa congenita; witschel dystrophy
Patient organizations
- Corneal Dystrophy FoundationCongenital stromal corneal dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Congenital stromal corneal dystrophy.
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