“it’s harder for me in this aspect, to not to be able to go whenever you want … the thing for me is that I don’t have enough time to do everything what I want to do…… I am more at home, at home and taking care of my kids, that’s what changed I guess. I‘m not going out as much as I used to” (mother 8)
As PCD is a rare disease, parents often spoke of their difficulty when dealing with medical professionals who don’t have an awareness of PCD. Children with PCD are often prescribed antibiotics to treat repeated ear and lung infections. Parents discussed challenges they experienced in getting antibiotic prescription from a GP or filled by the pharmacy.