Living with Congenital laryngeal web
A rare condition present from birth in which a thin membrane stretches across the voice box near the vocal cords.
Understanding Congenital laryngeal web
It is seen in newborns and infants. It can cause breathing problems and changes in the voice.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Breathing difficulties
- Hoarse voice
- Noisy breathing (stridor)
- Soft voice box tissue (laryngomalacia)
- Short stature
- Heart wall differences
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.
Care & treatment
- Care team
- Ear, nose, and throat specialists (otolaryngologists); 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
GARD says changes in genes cause this condition, but doesn't list a specific gene or inheritance pattern.
Also known as: glottic web, congenital anterior; laryngeal web; laryngeal web, familial; subglottic bar; subglottic web
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 Congenital laryngeal web.
Explore research for Congenital laryngeal web
Explore actively recruiting Congenital laryngeal web studies with HealthSpark.
Find actively recruiting studies for Congenital laryngeal web with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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