Living with cystic fibrosis: patient, family, and physician realities.
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The challenge for patient, family, and healthcare professionals alike is to separate the disease's insidiousness from the potential the patient and family have to enjoy life within the patient's abbreviated life span. We must emphasize that most patients with CF and their families do make a successful psychological adjustment. Simultaneously, parents must fulfill the varied physical and psychological needs of the child. A young adult patient with CF summarizes the patient's task: "Projecting a life goal, living it, having the goal altered by luck and by fate, accomplishing that goal, and then reflecting on what has been done. That is life. That is a life compressed for us; CF is myopic. We cannot look through the long vista of life. That is disappointing, frustrating, and cursed at. We can live now. We can do the best we can. Set goals that fit on our playing field and accomplish them." An emotionally adjusted family makes the patient's task possible. Achieving the goal of adequate adjustment also depends on the physician's having the medical expertise to manage this complex multisystem illness and the ability to make the medical knowledge comprehensible for patient and family.
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