Recent content by ddawson

The "PCDF Connect" and "PCD Family Support Group" pages on Facebook have members with kids who have PCD and also members who themselves have it. Definitely worth joining and asking any questions you might have. I'm sure they can point you to the best way to go about testing, etc. And I agree...

Yes, biopsies often come back negative for PCD when, in fact, the person has PCD. Ciliary structures can be intact, but are still dysfunctional in their mobility. Also, ciliary biopsies are very difficult to do well- sometimes that can come back negatively just because they were not done...

Usually symptoms like chronic wet cough, runny nose, frequent infections (especially ear infections in younger children), frequent pneumonia, unidentified respiratory distress after birth, etc, (often people who they thought had CF but tested negative, or even misdiagnosed with asthma) will...

Hi everyone! I hope it's okay that I am posting here- my son doesn't have CF, but he was diagnosed with Primary Ciliary Dyskinesia when he was two weeks old. He spent his first 2 weeks in the NICU for respiratory distress. Unfortunately, PCD treatment is based on CF management because so little...

Has Primary Ciliary Dyskinesia been considered? My son has this (I am on this forum because it's so rare that the only management available for it is based on CF management). PCD is often missed/misdiagnosed- his pulmonologist says it's probably more common than CF, but it's rarely diagnosed.