Welcome

Welcome to our website which was created in 2010 with the help of a grant from Jeans for Genes.

The website 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 current infections in the nose, ears, sinuses and lungs. If left untreated can lead to a form of lung damage known as ‘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 is chest physiotherapy and targeted antibiotics enabling individuals to lead normal lives.  Any problems resulting from PCD vary from person to person.

We hope you find the site useful and welcome any comments or suggestions about it.