What is a typical day for someone with PCD?
PCD is a multi-genetic disorder, meaning that there are many genes responsible for what we include under the umbrella term ‘PCD.’ Add to this the individual factors that influence expression of disease and it is no surprise that PCD has a very large spectrum of severity. Some people with PCD have more severe lung disease while others are plagued by worse sinus and ear disease. Some have mild disease in all areas and others have severe disease in all areas. It is hard to come up with a ‘one size fits all’ plan for treating PCD, especially because no studies to evaluate the effectiveness of specific treatments have ever been done in PCD. This is partly because the patient group is too small to get good answers and partly because the exorbitant cost of doing these trials makes them a fiscal impossibility for us right now. However, there have been lots of trials in cystic fibrosis and the PCD community can and does borrow freely from what has been done successfully in the CF community. Cli
