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 on Coronavirus for PCD Patients and Families
27th March 2020 Statement from the National leads of the children and adult PCD centres in England Following discussions between all the National leads for the both the Children’s and Adult PCD centres we advise that: All patients with PCD should be considered to be ‘extremely vulnerable’ and should therefore follow PHE guidelines for shielding
PCD Day – Saturday 27th June 2020
Do you have PCD or look after someone with it? Would you like to meet other families living with PCD and learn more about the condition? If so, join us on Saturday 27th June 2020 at the Delta Hotel, Milton Keynes. The aim of this free and friendly family day is to learn more about
PCD Event in Leicester – Thank you Rifat!
Many thanks go to Rifat who organised an event to raise awareness for PCD in Leicester on 29th Feb for Rare Disease Day. Rifat reached out to over 20 families in the area and even raised £214 for us in the process! Alison Claydon (PCD Nurse) and Rajinder Kang (PCD Physiotherapist) also attended to educate