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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Primary ciliary dyskinesia


Other Names for this Disease
  • Ciliary dyskinesia primary
  • ICS
  • Immotile cilia syndrome
  • Polynesian bronchiectasis
  • Polynesian bronchiectasis
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Your Question

Is there a support group for people with primary ciliary dyskinesia?  How many people have been diagnosed with primary ciliary dyskinesia?  What is their work status?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Is there a support group for individuals and families with primary ciliary dyskinesia?

There are several online support groups for families and individuals with Primary Ciliary Dyskinesia:

The Primary Ciliary Dyskinesia Family Support Group offers an "Online Community" feature on their website where people can post questions and discuss living with this condition. 

The Primary Ciliary Dyskinesia Foundation offers a forum for sharing information and resources.
Last updated: 11/12/2010

How many people have been diagnosed with primary ciliary dyskinesia?

Unfortunately for rare diseases, there's often no official method for tracking these conditions.  This makes it difficult to know exactly how many people have been diagnosed.  It is estimated that primary ciliary dyskinesia is diagnosed in 1 out of every 16,000 people.[1]  This means that approximately 19,000 people in the United States have this condition.
Last updated: 11/12/2010

What is the employment status of people with primary ciliary dyskinesia?

There is no specific information available about the employment status of people with primary ciliary dyskinesia.  Information from the Primary Ciliary Dyskinesia Foundation states that most affected individuals can expect to lead productive lives with treatment.[2]
Last updated: 11/12/2010

References