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.
Rare Resources Focus Group – 30th Jan 2019, University Hospital Wales
Genetic Alliance are running a project named Rare Resources and looking for family in Wales who have received a diagnosis of a rare, genetic or undiagnosed condition to share their experience and help design an information toolkit for other families across Wales. PCD Family Support Group members are invited to come to the first Rare
Report from the 3rd BEAT-PCD Conference and 4th PCD Training School
Chairman Fiona Copeland attended the 3rd BEAT-PCD Conference and 4th PCD Training School in Lisbon earlier this year. The report from the meeting can be found here.
Keswick to Barrow Charity Walk – Thank You
A big thank you to Mia and her family for walking the Keswick2Barrow charity event and raising a fantastic £1,075 for PCD! This is a great achievement – well done to all involved!