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Rare lung & airway condition

Primary ciliary dyskinesia

Primary ciliary dyskinesia (PCD) is a genetic condition in which the microscopic hairs that sweep mucus from the airways beat abnormally, causing lifelong wet cough, sinus and ear disease, and bronchiectasis.

Key points

The essentials at a glance.

What to look out for, how the diagnosis is confirmed, who looks after it, and the options that exist.

  • 01

    Clues from birth: unexplained newborn breathing problems, then a daily wet cough, persistent rhinitis and glue ear through childhood.

  • 02

    Around half of patients have organs mirrored (situs inversus) - Kartagener syndrome.

  • 03

    Diagnosis uses nasal nitric oxide screening plus high-speed video analysis of ciliary beating and genetic testing, in nationally designated PCD centres.

  • 04

    Management mirrors bronchiectasis and CF care: daily airway clearance, prompt antibiotics, hearing and sinus care, fertility counselling.

  • 05

    Adults with 'idiopathic' bronchiectasis and lifelong symptoms deserve PCD testing - many remain undiagnosed.

Understanding it

What it is, and what happens next.

In plain English - what is going on, how specialists confirm it, and the routes to treatment in the UK.

Cilia are the airway's conveyor belt, and in PCD an inherited fault in their molecular motors leaves mucus stagnant from the first day of life. The infections that follow - ears, sinuses, chest - are individually banal, which is exactly why the pattern is missed: adults are regularly diagnosed only after bronchiectasis has been labelled idiopathic for years.

Diagnosis and care in the UK are organised through specialist PCD centres, and referral is worthwhile at any age when the lifelong story fits; confirmed patients gain structured airway clearance, surveillance microbiology, coordinated ENT and audiology input, genetic counselling - and the quiet relief of a lifelong illness finally explained. In many parts of the UK, routine NHS outpatient referrals for problems like this can take several months, whereas an initial appointment with a private consultant is typically available within around two weeks.

A quiet reminder

This guide is for information, not medical advice.

Your GP or specialist knows your history and can tell you which parts apply to you. If in doubt, speak to them.

Published 2026-09-27 · Next review 2027-09-27

Frequently asked

Common questions about Primary ciliary dyskinesia.

Quick, plain-English answers to what people ask us most.

  • What is primary ciliary dyskinesia?

    Primary ciliary dyskinesia (PCD) is a rare inherited condition affecting the function of tiny hair-like structures (cilia) that normally help clear mucus from the airways and play roles elsewhere in the body, leading to chronic respiratory problems.

  • What causes PCD?

    It's caused by inherited genetic mutations affecting the structure or function of cilia, disrupting their normal coordinated movement, which is essential for clearing mucus and other functions.

  • What are the symptoms?

    Chronic cough, recurrent chest infections, persistent nasal congestion, and, in some people, hearing problems from recurrent ear infections are common from early childhood, along with, in some cases, fertility difficulties in adulthood.

  • Is PCD serious?

    Yes, without appropriate ongoing management, recurrent lung infections can lead to progressive lung damage over time, making early diagnosis and consistent specialist care important for long-term lung health.

  • Is PCD hereditary?

    Yes, it's an inherited genetic condition, typically in an autosomal recessive pattern, meaning both parents usually carry one copy of a faulty gene without being affected themselves.

  • Can PCD be treated?

    There's no cure, but regular airway clearance techniques, prompt treatment of infections, and physiotherapy significantly help manage symptoms and protect long-term lung function.

  • How is PCD diagnosed?

    Diagnosis involves specific tests including nasal nitric oxide measurement, examination of cilia structure and movement under specialised microscopy, and genetic testing, usually performed at a specialist centre.

  • How does PCD affect fertility?

    Because cilia-like structures are also involved in sperm movement and egg transport, PCD can affect fertility in both men and women, though many people with PCD can still conceive, sometimes with fertility treatment support.

  • PCD vs cystic fibrosis — what's the difference?

    Both cause chronic respiratory symptoms from early life, but they're caused by different genetic mutations affecting different underlying mechanisms; specific genetic and functional testing distinguishes between the two, which is important as management differs somewhat.

  • When should I see a specialist, and how quickly can I be seen privately?

    See a respiratory specialist for a child or adult with chronic cough and recurrent chest infections from an early age. Private specialist assessment is typically available within about two weeks, faster than standard NHS pathways for this rare condition.