Living with Ankyloblepharon filiforme adnatum-cleft palate syndrome
A rare condition present at birth with thin bands of tissue joining the edges of the eyelids, along with cleft lip and palate.
Understanding Ankyloblepharon filiforme adnatum-cleft palate syndrome
Thin bands of elastic tissue connect the eyelid edges on one or both sides. Otherwise, eye exams are normal. It is noticed in newborns.
Signs & symptoms
Symptoms vary. GARD lists this as the most common:
- Bands of tissue joining the eyelids (ankyloblepharon)
- Cleft lip
- Cleft palate
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, ear, nose, and throat specialists, eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in TP63 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
World Craniofacial Foundation and National Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Ear, nose, and throat specialists (otolaryngologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: World Craniofacial Foundation, National Foundation for Ectodermal Dysplasias
- 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 World Craniofacial 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
Changes in the TP63 gene cause this condition. It is autosomal dominant, so a changed copy of the gene from one parent can be enough.
Also known as: ankyloblepharon filiforme adnatum; ankyloblepharon filiforme adnatum and cleft palate; ankyloblepharon filiforme adnatum cleft palate; ankyloblepharon filiforme adnatum with cleft palate syndrome; ankyloblepharon filiforme congenitum; congenital filiform fusion of the eyelids with cleft palate and/or cleft lip
Patient organizations
- 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
- National Foundation for Ectodermal DysplasiasEctodermal dysplasias · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ankyloblepharon filiforme adnatum-cleft palate syndrome.
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