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.
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
Reminder! Book in your flu jab now!
It’s that time of year again when people with PCD need to get their flu vaccinations. This year it is especially important, and it is recommended that everyone in the household of someone with PCD, as well as close and regular contacts of those with PCD, get a flu jab. If you have general
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