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.
Patient involvement opportunity!
Patient involvement opportunity: Helping hospitals to improve paediatric PCD care We have been asked by the NHS commissioners (paediatrics) to recruit four families who have recently had a consultation over the phone or via video conferencing software. The commissioners are looking to understand our families’ experience of care during the COVID-19 pandemic and to
PCD Expert Panel Q&A Session and Covid-19 Update
Fiona Copeland and Lucy Dixon facilitated an expert panel Q&A Session today (20th May 2020) with Dr. Priti Kenia, Dr. Manjith Narayanan, Dr. Daniel Peckham, Dr. Simon Range and Dr. Woolf Walker. The questions were submitted by our members of the past few weeks. Prior to the meeting we had agreed with the whole of
Ramadan during covid-19 (for people with PCD)
Information on Ramadan for those with PCD during the covid-19 pandemic is available here (downloads as a .pdf file). Do not hesitate to contact us if you have any questions or comments.