Cystic fibrosis defined my identity for many years until I participated in clinical trials for Trikafta®. As my health improved, I struggled to figure out what this meant for my sense of self. This experience motivated me to help other young adults with CF navigate the many changes that modulators can bring.
Site Search
When I was in high school, I tried my best to hide my CF from my friends. When this put my health at risk, I knew I had to find friends who would accept me and to become a better advocate for myself.
Successfully managing a chronic disease like cystic fibrosis means more than just taking medications. It requires trusting partnerships between people with CF and their families with their CF care teams to develop treatment plans that line up personal life goals with health goals.
When I scroll through my social media accounts, it’s hard not to compare myself to other people and feel like I could have accomplished so much more had it not been for my cystic fibrosis. Instead of getting depressed, I now rely on therapy, positive affirmations, and being kind to myself to preserve my mental health
Nutritional support is a vital component of care for patients with cystic fibrosis. These recommendations cover caloric intake, dosing for pancreatic enzyme replacement therapy, and monitoring growth in childhood and weight status in patients of all ages.
To help standardize the diagnosis of both infants with positive newborn screening results and older patients with what may be cystic fibrosis symptoms, the Cystic Fibrosis Foundation worked with CF medical experts to develop guidelines on the steps leading to a confirmed diagnosis.
Most newborns in the United States are screened for CF at birth through newborn
Updated from 2003, these guidelines on infection prevention and control for cystic fibrosis provide recommendations for people with CF, their families, and health care providers to help reduce the spread of germs in the clinic and hospital setting, as well as in everyday life.
Nontuberculous mycobacteria can cause chronic pulmonary infection or can reside in the lungs without causing progressive disease. Challenges include making decisions on when and how to initiate treatment.
These clinical care guidelines from the Cystic Fibrosis Foundation provide recommendations for colorectal cancer screening for adults with CF.