Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Are you sure some of you do not have an underlying "Cause" for brochiectasis? My 15 year old daughter and I just got back from St.Louis Children's hospital, which is involved with a research project called PCD. (Primary Ciliary Dyskinesia). Even though she was tested for and subsequently found not to have Immotile Cilia Syndrome, about 20% of subjects don't test positive for this disease, unless you do other testing. There are (4) centers in the United States that are being given government grants for this testing. The University of Washington,University of North Carolina @ Chapel Hill, The University of Colorado, and Washington University School of Medicine in St. Louis Missouri.About 6,000 people have been confirmed to have this disease, but they believe many more have been diagnosed with other diseases that are actually this disease. Please visit their website @ www.pcdfoundation.org or Genetic diseases of Mucolociliary Clearance @ http:/rdcrn.epi.usf.edu/ There are also websites available for the UK as well as Canada Quote Link to comment Share on other sites More sharing options...
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