Abstract
Patients with cystic fibrosis present a continuum of complex medical problems to their carers. It is for this reason that cystic fibrosis care is best delivered by a multidisciplinary team from recognised paediatric and adult cystic fibrosis centres. The consequences of this practice are that, over time, patients are better nourished with a slow decline in respiratory function.1The ultimate benefit of better care is increased survival.2 Despite this greater knowledge and better management, cystic fibrosis as a disease repeatedly produces unpleasant novel management problems; the recent descriptions of a six fold increase in the incidence of digestive tract cancer and the remarkably high prevalence of osteoporosis are typical examples of the cystic fibrosis Pandora’s box.3 4 The current stigma of acquiring Burkholderia cepacia are both medical and social. The medical consequences of acquiring B cepacia may be accelerated lung disease, more intense treatment requirements, and doubt about suitability for transplantation due to a greater mortality following surgery with some strains.5The social consequences are segregation from other patients with cystic fibrosis in hospital, in social settings, and a ban from attending cystic fibrosis conferences or holiday schemes. It is not surprising that patients with cystic fibrosis infected by B cepacia have felt isolated by their peers and have done their best to organise their own social groups. The current strict infection control measures which are currently recommended to reduce B cepacia acquisition are restrictive enough but …