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The Primary Ciliary Dyskinesia Family Support Group was formed in 1990 to provide help, advice and understanding to patients, family and friends. The group comprises of members who are connected with primary ciliary dyskinesia (PCD) either through their children or who actually have PCD.
PCD is an inherited disorder where impaired airway clearance results in recurrent infection, inflammation and airway narrowing leading to lung damage. The condition may also involve recurrent infections in the nose, ears and sinuses, and in some cases fertility issues. The condition has also been called immotile cilia syndrome and Kartagener's syndrome.
In February 1994 the PCD Medical Advisory Board was formed. This is a group of experienced doctors, scientists, researchers and medical personnel with a particular interest in PCD. They have prepared a PCD protocol. The Family Support Group promotes genetic research on PCD and generally improves awareness and management of PCD. The aims of the PCD Family Support Group are as follows.
- To provide support to patients with PCD and parents of children known to have the syndrome.
- To bring the disease to the attention of the medical profession and the public.
- To provide an up to date information service.
- To raise money to promote research to aid diagnosis and treatment of children and adults with PCD.
Testing for the condition is by a simple nasal brushing conducted at one of three specialist centres, the Royal Brompton, Southampton General, and the University of Leicester. The results normally take about eight weeks to receive.
Literature available from the PCD Family Support Group includes: general leaflets in English, Urdu and Arabic; PCD educational DVD; information on socials. A paper on PCD Diagnosis and Standards of Care is available on the website.
Last updated on 04/12/2014