Cystic fibrosis (CF) is an inherited disorder that affects the respiratory and digestive systems, as well as other organs in the body. People with this disorder have a genetic mutation that alters cell protein, hindering its ability to move chloride, a component of salt, to the cell surface. This causes the mucus in many organs like the lungs, pancreas, and liver to become thick and sticky. Resulting symptoms typically include persistent coughing, frequent lung infections, shortness of breath, chronic sinus infections, and poor growth or weight gain.

Today, there are close to 40,000 people in the United States living with CF1, which is most often diagnosed in infancy, although mild symptoms can cause the disease to go undiagnosed until later in childhood. For parents and caregivers, the diagnosis can come with many questions for a child’s present and future.

Our team at Foundation Care is dedicated to helping parents and caregivers support their children in the most thoughtful and complete way, addressing current needs while equipping families and caregiver units with information to build long-term care plans. Our Parent’s Reference helps adults process and manage the way CF will affect not just the child who has been diagnosed, but their family/caregiver unit, to help them make the best decisions for the emotional and physical health of their child, involved siblings, and themselves.

As CF is a lifelong disease, parents and caregivers are encouraged to empower their children to understand and take ownership of their treatment plan when the time is right. Our Teen’s Guide helps young adults incrementally assume more of the responsibility of their health and wellness while tackling typical teenage stressors, including school and career planning.

“We are proud to offer these updated resources to the CF community, highlighting our comprehensive approach to care,” said Rachel Wiechert, Pharm.D., BSN, Director of Pharmacy. “When the goal is to optimize therapy benefits over a lifetime, the role of nutrition and exercise, accompanied by the support of family and caregivers cannot be overvalued. These care elements, combined with conversations about the future, help children feel equipped to make more informed decisions that positively impact their health as they mature.”

At Foundation Care, we recognize that the needs of people living with chronic diseases change throughout their lives. We aim to help our patients and their caregivers navigate the complex medical and emotional realities of CF so they can feel peace of mind, armed with the knowledge to make informed decisions about treatment and lifestyle to yield the best possible outcomes.

Learn more about the symptoms of Cystic Fibrosis and ways to manage the impact of the disorder on nutrition, exercise, school, and more.

Cystic Fibrosis Foundation. (2022, November 16). Cf Foundation Estimates Increase in CF Population. https://www.cff.org/news/2022-07/cf-foundation-estimates-increase-cf-population#:~:text=Close%20to%2040%2C000%20children%20and,with%20CF%20across%2094%20countries.