The Human Factor in Cystic Fibrosis

Condensed from the talk by Giulio Barbero, M.D.

Fall 1994

"We have to remember that people with CF are people first and not a disease", said Dr. Giulio Barbero, Professor, Department of Child Health at the University of Missouri at Columbia. His highly entertaining and artful presentation, which focused on psychosocial aspects of cystic fibrosis, included Ziggy and Far Side cartoons, paintings by Georges de la Tour and Goya, and insightful poetic quotations. Absurdities inherent in being a patient-and in being alive in general-became poignantly apparent.

Barbero's talk broached many sides of life with CF. He spoke of the initial diagnosis where he noted that families and people with CF can be devasted at the news, but ultimately build a new identity and almost a new life. He examined noncompliance with medical regimes. Barbero stated sympathetically that these regimes can feel extraordinarily tyrannical. Depending on the procedure, it can be time-consuming, exhausting, isolating and difficult. He counselled people who carefully follow regimes to also be aware of the personal cost. "Every regimen is on trial and so are the people who recommend them!" he stated emphatically. Each one should control the symptoms and the disease, have no distressing side effects, not interfere too much with daily activities, and produce good effects relative to the negative effects on the individual's identity.

Dr. Barbero pointed out that people living with chronic illness learn to live with uncertainty, "the sword of Damocles hanging over one's head!" And yet most of these people go about their lives, get educations and find employment. All members of the family can be affected. Barbero noted that siblings of a child with CF can often feel cheated of attention. And yet they too overcome. Many have a highly developed sense of compassion and often move into helping professions.

Dr. Barbero once asked adults with CF over the age of 35 what advice they would offer youngsters with CF. Their advice follows:

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