Living with Immotile cilia syndrome due to defective radial spokes
A long-term breathing condition in which the tiny hairs (cilia) in the airways can't move to clear mucus.
Understanding Immotile cilia syndrome due to defective radial spokes
The cilia can't move, so mucus isn't cleared from the airways. The same problem with cilia can make sperm unable to move.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes:
- Long-term breathing (respiratory) disease
- No movement of airway cilia
- Mucus not cleared from the lungs
- Sperm that don't move
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 says the cause is the lack of radial spokes in the cilia. It is inherited in an autosomal recessive pattern, meaning a child inherits a changed copy of the gene from each parent.
Also known as: cilia with defective radial spokes; ciliary dyskinesia with defective radial spokes
Patient organizations
- Primary Ciliary Dyskinesia (PCD) FoundationImmotile cilia syndrome due to defective radial spokes · United States
You are more than your diagnosis
Perspectives from people navigating life with Immotile cilia syndrome due to defective radial spokes.
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