PCD stands for Primary Ciliary Dyskinesia. It is a very rare, but under-diagnosed, genetic disorder. Approximately 1500 people in the US have been diagnosed with PCD, but it is believed that around 25,000 people live with it.
PCD is a dysfunction of the motile (moving) cilia. The cilia are the tiny hair-like structures that line the airways to keep dust and germs moving up and out of the body. Without functioning cilia, mucus builds in the airways causing frequent infections of the lungs, ears, throat, and sinuses and can lead to serious and permanent damage. About 50% of people with PCD are also born with situs inversus or situs ambiguous/heterotaxy. Situs inversus is a condition in which the placement of organs are a mirror-image of the typical placement. Situs ambiguous/heterotaxy is the condition of having an unusual pattern of unique organ development or placement.
There is currently no cure. They are just beginning to do studies on treatments specifically for people living with PCD. Consequently, there is no standard of care for PCD, and the daily preventative treatments are based on research for cystic fibrosis, a similar, but very different disease.
FOR MORE INFORMATION ON PCD:
TO DONATE DIRECTLY TO THE PCD FOUNDATION:
Or mail a check or cash to:
Primary Ciliary Dyskinesia Foundation
10137 Portland Avenue South
Minneapolis, Minnesota 55420