Welcome to our website which provides an up-to-date information service about the condition, how it is diagnosed and how to live with it on a daily basis. Please look at the video case studies with real life people affected by PCD telling their stories.
Primary Ciliary Dyskinesia (PCD) is an inherited, relatively rare condition associated with the abnormality of cilia (microscopic hairs that beat in the airways, sweeping secretions out of the respiratory tract). PCD may affect the lungs, nose, sinuses, ears and fertility.
The condition involves recurrent infections in the nose, ears, sinuses and lungs. If left untreated can lead to a form of lung damage known as a ‘bronchiectasis’.
Up to 50% of patients with PCD also have dextrocardia (heart on the right side) and situs inversus (internal organs on opposite side to normal).
The mainstay of treatment for people with PCD is regular chest physiotherapy to clear secretions from the lungs and targeted antibiotics to treat infections. PCD can affect people in a variety of different ways, but when managed well, most with the condition leave relatively normal lives.
We hope you find this website useful and please do contact us if you have any comments or suggestions.
European Lung Foundation – Patient Spirometry Survey
The European Lung Foundation has launched a survey to learn more about patients’ experiences of spirometry testing. The aim of this survey is to find out more about your experience of spirometry testing – a breathing test which measures the amount of air in your lungs and how quickly you can breathe out. Please only
PCD Pediatric Care Satisfaction Survey
The PCD Pediatric Management Service are really keen to hear about your experiences of the care you receive and find out what your ‘ideal PCD Service’ would look like. This is part of their commitment to continually improve the care that you receive and ensure that we are meeting your needs. There are 2 separate
PCD AGM, 30th June 2018, Milton Keynes
The PCD Day and AGM in Milton Keynes was another fantastic event and a great opportunity for friends and families impacted by PCD to meet and network in an informal and enjoyable setting. The day began with a welcome from Fiona Copeland, Chairman of the PCD Family Support Group, and an introduction of the key