Primary Ciliary Dyskinesia (PCD)

— A simple description of PCD —
With PCD the cilia in the body are unable to function therefore trapping mucous which is a breeding ground for bacteria. Cilia are found in different areas of the body including the lungs, sinuses, ears, ventricles of the brain and the reproductive organs. Chronic infections of the upper and lower respiratory tract, including the lungs, the ears and the sinuses, are the primary problems that people with PCD experience.


— An overview of how PCD affects your family and particularly Maya —
Maya's family feels blessed that PCD was suspected so early and that they live in Toronto where the Hospital for Sick Children is located. Early diagnosis and treatment is vitally important to her long term health. However, despite the early diagnosis and the daily chest physiotherapy that has been done since she was just days old, Maya was still diagnosed with bronchiectasis in 2009. We thought this meant that the airways in her lungs had sustained permanent damage which is irreversible, however, a CT scan in early 2011 showed marked improvement in her lungs. Another CT scan in early 2013 also showed improvement and this is encouraging. For Maya and her family, PCD means twice daily physiotherapy and, recently nebulized, medications. PCD means daily inhaled medicine and daily antibiotics. PCD means regular visits to the PCD Clinic at Sick Kids. PCD means regular appointments at the ENT Clinic at Sick Kids (Maya has had four sets of tubes put in her ears).



Additional Information and Resources

SickKids The Hospital for Sick Children
PCD Foundation
PCD Family Support Group (UK)



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