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.
Scottish PCD Day 2019
Scottish PCD Day October 2019 On 5th October 2019, the PCD Family Support Group Scotland were delighted to hold their third Family PCD Day. We chose the month of October to coincide with Global PCD Awareness month. This year’s venue was the Queen Elizabeth University Hospital Campus where we were warmly hosted by Liz Dougan,
PCD Wellbeing Recruitment – Can you help?
All the information to participate in this short survey for research into the psychological wellbeing of patients with PCD is available here: PCD & Psychological Wellbeing Recruitment Poster
The First PCD Clinical Interpretation Meeting
The first PCD Clinical Interpretation Panel meeting, which assembles together an expert national group for analysing PCD patient information from the 100,000 Genomes Project was held in University Hospital Southampton on 17th September 2019. Click here to download a summary of the meeting: PCD meeting notes for patients