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.
Update Statement from the PCD National Leads
Please find an updated statement from the National Leads of the children and adult PCD centres in England: PCD statement for 17 November 2020
ERS Congress September 2020
Between 7-9th September of this year, Katie virtually attended the ERS Congress on our behalf. Read her summary here: ERSCongress.pdf
Shielding Update 13-10-2020
Following Boris Johnson’s announcement yesterday we are now following a three-tier system. Check out this infographic for more details of what this means for those with PCD: SHIELDING AND PCD OCTOBER 2020