Living with Jaw-winking syndrome
A rare condition from birth in which an upper eyelid rises quickly, like a wink, when the jaw moves.
Understanding Jaw-winking syndrome
The wink can be set off by opening the mouth, moving the jaw to the side, chewing, smiling, or sucking. It is usually present at birth and usually affects one eye. It can occur with other eye differences such as strabismus or with vision problems. It is generally sporadic, but family cases have been reported.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Eyelid winking with jaw movement
- Drooping of one upper eyelid
- Eyes that do not line up (strabismus)
- Lazy eye (amblyopia)
- Eyes pointing too low (hypotropia)
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 Facial Paralysis & Bell's Palsy 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
The exact cause is not known. GARD lists autosomal dominant inheritance, and says it is generally sporadic but family cases have been reported.
Also known as: abnormal eyelid innervation syndrome; jaw winking; jaw-blinking; jaw-winking; mandibulo-palpebral synkinesis-ptosis syndrome; marcus gunn jaw winking synkinesis
Patient organizations
- Facial Paralysis & Bell's Palsy FoundationJaw-winking syndrome · United States
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Perspectives from people navigating life with Jaw-winking syndrome.
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