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.
PCD Family Support Group AGM and Q&A
You are warmly invited to our AGM and Q&A this Saturday 19th June, 10.30-12pm. Join us for this year’s AGM which celebrates 30 years of the PCD Family Support Group! We have some BIG announcements and are looking forward to catching you up on everything that has happened in the past year. We will also
Call for participants! Quality of Life survey
Call for participants to complete an online survey We would appreciate if parents of children with PCD (younger than 6 years of age) could help us with the development of a Quality of Life Questionnaire. This involves completing this online survey. The survey takes approximately ten minutes to complete and includes questions relating to how
Get Involved in Research into Fatigue and PCD!
Is fatigue a symptom of your/your child’s lung condition? If so, The University of Liverpool is looking to talk to the following individuals: Children and young adults (age 6 to 25) who have been diagnosed with PCD, Parents/caregivers of children and young adults Healthcare professionals who manage the treatment and management of PCD The