Living with Rutland ciliary disorientation syndrome
A condition in which the tiny hairs that sweep mucus out of the airways point in different directions, leading to repeated lung and airway infections.
Understanding Rutland ciliary disorientation syndrome
Cilia help move mucus and other substances out of the lungs. In this condition, the cilia are not lined up in the same direction, which can lead to repeated respiratory tract infections. A case study suggested the condition is present from birth and may not affect fertility.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. Its summary describes repeated respiratory infections.
- Repeated infections of the breathing passages
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.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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
It is autosomal recessive, so a child inherits a changed copy of a gene from each parent. GARD does not name a gene.
Also known as: ciliary discoordination due to random ciliary orientation
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 Rutland ciliary disorientation syndrome.
Explore research for Rutland ciliary disorientation syndrome
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