Most people with cystic fibrosis live a normal daily life, with the challenge of incorporating daily medications, airway clearance techniques, and other treatments and medications. Children with CF grow up, go to school, have friends, have hobbies, and can exercise and play sports. Many go to college. Many marry and have families.
In addition to managing your child's treatment and care, it helps to understand what to expect as your child grows.
Watch parents of children with CF and their kids discuss:
- Their own tips for parenting a child with CF
- Incorporating CF into daily family life
- Finding a balance between CF and healthy childhood development
Caring for Your Infant
As the parent of an infant with CF, you may have many questions and may be feeling a range of emotions. In addition to comprehensive care and medical support, the Cystic Fibrosis Foundation offers the "Pathways to Lifelong Health" video series for parents of babies recently diagnosed with CF. This series includes perspectives from both CF care team members and CF parents and covers topics including diagnosis, nutrition, airway clearance, balancing daily life, and CF care and support.
Watch the video series here.
Learn more about recommended clinical care guidelines for newborns to 5-year-olds, including a schedule to guide care teams.
Working With Your Child's School
Caring for and treating cystic fibrosis doesn't just happen at home. It happens every day, everywhere your child goes -- including day care and school.
Letting a day care or school know your child has CF is a personal decision. You do not have to disclose this information, but enlisting the help of educators can make it easier for your child to achieve their academic goals while maintaining their health.
We offer a number of resources for parents of children with CF who are starting school, including information about how to educate teachers about the disease, a letter template for informing a school that your child has CF, what to do when there is more than one child at school with CF, and more.
Watch families, a school health coordinator, a care provider, and a social worker talk about:
- Partnering with the school staff to manage your child's daily CF care
- Accommodating the specific needs of students with CF
- Avoiding germs and infection prevention
Learn more about working with your child's school.
Talking to Your Child About CF
A child's first questions about CF often come after starting school. He or she sees that other children do not take enzymes or do daily airway clearance. They may be asked questions about CF by other children, adults, or teachers.
The goal of telling your child about CF is to help your child know what CF means and why eating right, taking enzymes and other medicines, and doing airway clearance is important. Another goal is to get your child ready to do his or her own care. Children should be taught about CF as soon as they can understand. What you say to your child depends on his or her age, personality, and ability to understand. If you have questions, ask your CF care team for help.
Watch the families of children with CF discuss:
- The importance of being open and honest about their child's CF
- Fostering healthy growth and development
- Their own tips for addressing common questions and concerns
To learn more about how people with CF can go on to lead long, fulfilling lives, watch an adult with CF discuss:
- Going to college and pursuing a career
- Getting married
- Managing her disease to accomplish her goals