Living with Familial median cleft of the upper and lower lips
A rare condition present from birth with a cleft in the middle of both the upper and lower lips and some tooth and gum differences.
Understanding Familial median cleft of the upper and lower lips
The lower lip cleft involves only the colored edge of the lip, and the upper lip cleft involves muscle. People may also have a double lip frenulum, fused gum and lip tissue, poorly aligned teeth, and a gap between the front teeth. Features can vary within a family.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Cleft in the middle of the upper lip
- Cleft lower lip
- Fusion of the gums
- Gap between the teeth (diastema)
- Irregular teeth
- Differences in the jaw or midface
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 FACES: The National Craniofacial Association 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 it. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: orofacial cleft 14
Patient organizations
- FACES: The National Craniofacial AssociationFamilial median cleft of the upper and lower lips · United States
- World Craniofacial FoundationCraniofacial anomalies · United States
- Children's Craniofacial AssociationCraniofacial anomalies · United States
- myFaceCraniofacial anomalies · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial median cleft of the upper and lower lips.
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