Cystic Fibrosis (CF) is a hereditary and chronic disease that affects the respiratory and digestive system with a sticky and thick mucous. If you’re the parent of a child who’s been diagnosed with CF, it’s important to build a strong support system. Both healthcare providers and fellow parents can be invaluable for helping you and your child live mutually fulfilling lives.
Help Your Child Enjoy a Life That’s as Normal as Possible
Immediately after receiving a diagnosis, start meeting with specialists and forming a healthcare strategy so your youngster can maintain good health as much as possible. Besides that, try to make it possible for your child to participate in many of the same activities as his or her peers. Whether that means eating a school lunch or playing sports, those things might seem relatively minor, but they promote proper development. Aim to encourage normalcy without compromising health.
Have Honest Conversations
The way you talk to your child about CF will change based on factors like age and maturity level. Explain how CF is not contagious, but because it’s a genetic disease, it could be passed to offspring. Also, emphasize while there is no cure, researchers are working hard to find one. You can also discuss how clinical trials are used to test new medicines and devices that could help CF patients live better.
Explain Purposes and Consequences
Throughout your child’s life, you’ll likely be advised to pursue a number of different treatments. When possible, use simple language to explain how those interventions work and why they’re needed. If an aerosol therapy program is recommended, we sell products just for kids, such as masks that have smaller dimensions and feature fun designs. More importantly, talk about what could happen if your child either intentionally or mistakenly misses a treatment.
For more information, about parenting a child with CF, check out the links below:
- http://forum.cysticfibrosis.com/forums/4-Families - (Forum for families affected by CF)
- Cystic Fibrosis Foundation
- Cystic Fibrosis Parent Handbook from Seattle Children's Hospital