Living with Syngnathia multiple anomalies
A rare genetic condition with jaws joined by bone and varied differences in growth, the eyes, ears, and limbs.
Understanding Syngnathia multiple anomalies
The degree of jaw joining varies. Other features vary too and may include slow growth, intellectual disability, a small head, eye differences, shaky eye movements, hearing loss, and spine bone differences. Genital, limb, and facial differences can also occur. Signs may begin during pregnancy, at birth, or in infancy.
Signs & symptoms
GARD doesn't list specific symptoms in a separate list. The summary describes:
- Upper and lower jaws joined by bone
- Slow growth
- Intellectual disability
- Small head size
- Eye differences and shaky eye movements
- Hearing loss
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 bone and joint 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
- Bone and joint specialists (orthopedists or orthopedic surgeons); 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
Changes in genes (variants) cause this condition. GARD doesn't list which gene or how it is inherited.
Also known as: dobrow syndrome; syngnathia-multiple anomalies syndrome; syngnathia, multiple anomalies syndrome
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 Syngnathia multiple anomalies.
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