Living with Oromandibular-limb hypogenesis spectrum
A rare nerve and muscle condition, Moebius syndrome, that affects facial expression and eye movement from birth.
Understanding Oromandibular-limb hypogenesis spectrum
Signs are present from birth. Many people cannot smile, frown, or raise their eyebrows, and weak face muscles cause feeding problems in infancy. Many have a small chin, small mouth, or cleft palate, plus speech and dental differences. Eye movement is limited, and the eyelids may not close fully. Hand and foot bone differences, low muscle tone, and hearing loss can occur. GARD lists onset as during pregnancy and as a newborn.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weak or paralyzed face muscles (facial palsy)
- Expressionless face
- Limited eye movement and crossed eyes
- Feeding difficulties in infancy
- Low muscle tone and delayed motor skills
- Club feet and short fingers or toes
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, ear, nose, and throat 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.
- 4Connect with expert centers
Moebius Syndrome Foundation and World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Ear, nose, and throat specialists (otolaryngologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Moebius Syndrome Foundation, 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 Moebius Syndrome 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
GARD says changes in genes cause this condition. It lists autosomal dominant inheritance, meaning one changed copy of a gene can be enough.
Also known as: absence or underdevelopment of the 6th and 7th cranial nerves; congenital facial diplegia; congenital facial diplegia syndrome; congenital oculofacial paralysis; facial-limb disruptive spectrum; hypoglossia-hypodactyly syndrome
Patient organizations
- Moebius Syndrome FoundationOromandibular-limb hypogenesis spectrum · United States
- 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 Oromandibular-limb hypogenesis spectrum.
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