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 current 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 is chest physiotherapy and targeted antibiotics enabling individuals to lead normal lives. Any problems resulting from PCD vary from person to person.
We hope you find the site useful and welcome any comments or suggestions about it. Contact Us
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PCD Day and AGM 30th June 2018 Milton Keynes
Please join us for our Annual Meeting at the Hilton Hotel, Kents Hill, Milton Keynes on Saturday, 30th June 2018 from 11 a.m. to 4 p.m. All PCDers and their families welcome. Please register on Eventbrite
European Lung Foundation Pregnancy Survey 2018
Please help the European Lung Foundation learn more about family planning and pregnancy:- Tell us about your experience of having a lung condition during family planning and pregnancy. We have launched a survey to learn more about how having a lung condition can affect a person’s options and choices around family planning and pregnancy. This
BEAT-PCD Conference and Training School – Lisbon 6th-9th February
I was invited to speak at the BEAT-PCD conference this year on how patient organisations can have an impact on driving patient services. The audience were keen to hear how our small group has managed to help secure funding from the NHS for PCD Diagnostic Services and for the management of PCD patients throughout their