Living with Isolated ankyloblepharon filiforme adnatum
A rare condition present at birth in which thin bands of tissue join the upper and lower eyelids and keep the eye from opening fully.
Understanding Isolated ankyloblepharon filiforme adnatum
One or several thin bands of connective tissue stretch between the eyelids, so the eye cannot open all the way. It is seen in newborns and infants. GARD reports that the bands should be removed to avoid lazy eye (amblyopia), and this can be done easily in the newborn period. It can happen alone or along with other conditions, such as trisomy 18.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes this main feature:
- Thin bands of tissue between the upper and lower eyelids
- Eyes cannot open fully
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, 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
World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); Eye disease specialists (ophthalmologists); 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 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
GARD says changes in genes cause this condition. It can occur by chance (sporadically) or be passed down in an autosomal dominant way, where one changed copy of the gene is enough.
Also known as: ankyloblepharon filiforme adnatum
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
You are more than your diagnosis
Perspectives from people navigating life with Isolated ankyloblepharon filiforme adnatum.
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