After being the primary caregiver to my son for so long, I was surprised by the many emotions that came with his transition to adulthood. But I’ve learned these complicated feelings are just an opportunity for us to grow closer.
Site Search
I thought I was well-prepared to have my third baby boy, but when Oliver was diagnosed with CF, everything I knew went out the window. Though the journey has been isolating at times, my family has found our new normal with support from others in the CF community.
We couldn’t wait to take our daughter home from the hospital. But when the time finally came to bring my daughter home, I began to lose confidence in myself as I tried handling all the medications and formula. With time, I built a great routine for my family and learned some tips and tricks to share with other new parents.
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.
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.