Living with Immotile cilia syndrome due to excessively long cilia
A breathing condition with long cilia that don't clear mucus well, causing nose, sinus, and lung problems.
Understanding Immotile cilia syndrome due to excessively long cilia
Nasal cilia are twice the normal length but normal in width. Mucus clearance from the lungs is severely reduced.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Long-lasting runny nose (chronic rhinitis)
- Sinus infections (sinusitis)
- Bronchitis
- Nasal polyps
- Poor mucus clearance from the lungs
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Primary Ciliary Dyskinesia (PCD) Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Primary Ciliary Dyskinesia (PCD) 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 Primary Ciliary Dyskinesia (PCD) Foundation
- 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 doesn't name a gene. It says the disorder is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: ciliary dyskinesia with excessively long cilia
Patient organizations
- Primary Ciliary Dyskinesia (PCD) FoundationImmotile cilia syndrome due to excessively long cilia · United States
You are more than your diagnosis
Perspectives from people navigating life with Immotile cilia syndrome due to excessively long cilia.
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