The expression, “It takes a village,” sometimes seems to apply to my clinic visits. I like having my family accompany me. They support me emotionally and help me keep track of important health information.
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As the mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.
I didn't know whether to cry on my surgeon's shoulder or punch him. In the end, I did neither. I looked back at him, dug deep, and said over and over again, “No. I won't sign.”
As an individual with cystic fibrosis, I can give you all kinds of examples of how providers shouldn't treat their patients. However, it was my experience as a fictional patient that taught me how to be a better CF patient.
The Cystic Fibrosis Foundation assembled a committee to evaluate research advances and revise guidelines for CF-associated liver disease.
These guidelines were developed by consensus based on expert opinion and a medical literature review to provide evidence-based recommendations for chronic medication use for lung health maintenance.
Allergic bronchopulmonary aspergillosis is a hypersensitivity lung disease that results from exposure to Aspergillus fumigatus and occurs primarily in people with asthma or with cystic fibrosis. These guidelines were developed via a consensus conference of experts in 2003.
To aid clinicians, patients, and families in the best use of modulators, the Cystic Fibrosis Foundation sponsored the creation of guidelines to inform discussions and support decision-making.
Normal growth is associated with good lung function in children with CF. The CF Foundation gathered a team of experts to determine the best ways to ensure good nutrition for healthy growth.
Enteral tube feedings are an important treatment option in cystic fibrosis when oral intake is not adequate to meet nutritional goals. A multidisciplinary Cystic Fibrosis Foundation panel developed consensus evidence-based guidelines on all aspects of care regarding enteral feeding.