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 lead relatively normal lives.
We hope you find this website useful and please do contact us if you have any comments or suggestions.
Call for participants: parents of children with PCD under 6 years of age
We are asking parents of children with PCD (younger than 6 years of age) to help us develop a Quality of Life Questionnaire. In the future we plan to do some studies to investigate different treatments in PCD. To see whether the treatments work, a Quality of Life Questionnaire will allow us to assess whether
Call for participants! Survey for Research
We would like your views on your PCD treatment and to understand how you cope with daily stressors and the support you have from friends and family. The survey takes 30-45 minutes to complete and questions ask about your wellbeing over the past 2 weeks. If you are 18 or over: for more information and
Survey for Rare Disease – Deadline 29th Nov
Follow this link to find out more and take the survey – the deadline for responses is Friday 29 November. In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease. This conversation aims to gather a range of views from the rare