Living with Thiel-Behnke corneal dystrophy
A rare genetic eye condition that clouds the front of the cornea and slowly lowers vision.
Understanding Thiel-Behnke corneal dystrophy
The cornea is the clear front surface of the eye. This condition leads to gradual loss of vision. It can begin anywhere from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow decrease in sharpness of vision
- Cloudy areas in the cornea
- Eye pain that comes and goes
- Strong sensitivity to light (photophobia)
- Repeated breakdown of the cornea's outer layer (corneal erosions)
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 TGFBI 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
This condition is caused by changes in the TGFBI gene. It is autosomal dominant, which means one changed copy of the gene can be enough to cause it.
Also known as: anterior limiting membrane dystrophy type 2; anterior limiting membrane dystrophy type ii; cdb type ii-corneal dystrophy of bowman's membrane, type ii; cdtb; corneal dystrophy honeycomb shaped; corneal dystrophy honeycomb-shaped
Patient organizations
- Corneal Dystrophy FoundationThiel-Behnke corneal dystrophy · United States
You are more than your diagnosis
Perspectives from people navigating life with Thiel-Behnke corneal dystrophy.
Explore research for Thiel-Behnke corneal dystrophy
Explore actively recruiting Thiel-Behnke corneal dystrophy studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- 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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