Living with Duane retraction syndrome
An eye movement condition in which one eye can't move fully outward, and the eyeball pulls back as it moves inward.
Understanding Duane retraction syndrome
As the eye moves inward, the eyeball pulls back into its socket and the eyelid opening narrows. The eyes may not look in the same direction (strabismus), so some people turn their head to see. Usually only one eye is affected, most often the left. About 10 percent develop amblyopia ('lazy eye'). About 70 percent of cases are isolated, with no other symptoms. The rest occur as part of other syndromes.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Limited outward eye movement
- Limited inward eye movement
- Eyeball pulls back as the eye moves inward
- Narrow eyelid opening
- Crossed or misaligned eyes (strabismus)
- Hearing loss in some people
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 brain and nervous system specialists, 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
- Brain and nervous system specialists (neurologists); 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 rare disease patient organizations for support
- 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 a person's genes cause this condition. It can be autosomal dominant (one changed copy is enough) or autosomal recessive (a changed copy from each parent).
Also known as: drs; duane anomaly; duane syndrome; duane's retraction syndrome; duane's syndrome; durs
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Duane retraction syndrome.
Explore research for Duane retraction syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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