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 Disease Day 28th February 2019 at the House of Commons
Gary and Myra Tipping attended Rare Disease Day at the House of Commons on a lovely sunny day on 28th February. It was a very successful and well attended event. Catherine West MP was the first speaker and she welcomed everyone. She explained that there are over 6,000 rare diseases and that 3.5 million people
Lung Function Focus Group – Parents Required
The Royal Brompton are seeking individuals to support with a focus group on lung function. If this is of interest, please review further details below. Role description for focus group members – Developing the utility of multiple breath washout in the pediatric tertiary center Background: This study will look at lung function testing
Rare Diseases Day – Feb 2019 – Events Across the UK
Sign up to celebrate Rare Disease Day 2019. Rare Diseases UK will be hosting their annual receptions at the Senedd in Cardiff, the House of Commons in London and the Scottish Parliament Building in Holyrood. Rare disease patients and their families are invited to join politicians and other stakeholders in the rare disease community to mark