Living with Bencze syndrome
A rare genetic syndrome with mild uneven growth of the face and eye muscle problems.
Understanding Bencze syndrome
It causes mild facial asymmetry, while the skull and eyeballs are unaffected. It also involves eyes that turn inward or cross, lazy eye (amblyopia), and sometimes a hidden cleft in the roof of the mouth. It is noted in childhood. There have been no new reports in the medical literature since 1979.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Uneven face (facial asymmetry)
- Crossed eyes (strabismus)
- Lazy eye (amblyopia)
- Eyes set widely apart (telecanthus)
- Upward-slanting eye openings
- Open bite
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 ear, nose, and throat specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: World Craniofacial Foundation
- 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 World Craniofacial Foundation and other patient organizations
- 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 cause this condition. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: hemifacial hyperplasia strabismus syndrome; hemifacial hyperplasia with strabismus; hemifacial hyperplasia-strabismus syndrome
Patient organizations
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- FACES: The National Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Bencze syndrome.
Explore research for Bencze syndrome
Explore actively recruiting Bencze syndrome studies with HealthSpark.
Find actively recruiting studies for Bencze syndrome 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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