Primary Ciliary Dyskinesia (PCD) is a relatively rare, inherited condition associated with cilia abnormalities. Cilia are microscopic hairs that beat in the airways and sweep secretions out of the respiratory tract. In people with PCD, these abnormalities can affect the lungs, nose, sinuses, ears and the individual’s fertility. Up to 50% of people with PCD also have dextrocardia (where the heart is on the right hand side) and situs inversus (where internal organs are situated on the opposite side to most people). People with PCD often experience recurrent infections of the ears, nose, sinuses and lungs. If left untreated, this can lead to a form of irreversible lung damage known as ‘bronchiectasis’. 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 live relatively normal lives.

Please watch the video below to get a better understanding of the condition and how it is diagnosed.

Once diagnosed, children living with PCD in England will be referred to one of the four National PCD Management Centres at either: Leeds/Bradford, Leicester Royal Infirmary, University Hospital Southampton or the Royal Brompton Hospital. Each centre has a specialist clinical team including respiratory and Ears, Nose and Throat consultants. They will work closely with the patient’s local respiratory team to ensure that the child is receiving the best possible care. For adults and for children who do not live England this care will be delivered by their local respiratory team.

Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.