Which advice would you give to someone who has just been diagnosed with Primary ciliary dyskinesia?

Research the condition and test for the Gene associated with P.C.D . "Find a" cystic Fibrosis" center if you can't find a P.C.D center for treatment. Cystic Fibrosis specialist are much more aware how to treat P.C.D over an standard Pulmonologist. Since P.C.D is so rare it still doesn't have its own Quality of Life measurements. So we borrow from cystic Fibrosis to treat P.C.D untill research makes out our own "proven" treatments. Hence why having special medications approved threw insurance is such a hassle.aka TOBY,Amikacin. Also a real good P.C.P familiar with the specialist you choose so that they can have great communication and so the PCP will better understand how to treat and not over medicate your self or child. You have to be careful not to over use antibiotics so that when there is a greater illness it can be treated and not immuned to the offered medication.