Not falling Off:
Taking over responsibility for treatment

This information is provided for your consideration; remember to always consult with your healthcare team.

For children with cystic fibrosis, most of the responsibility for treatment falls to their parents. Parents maintain their child's schedule of medical visits as well as coordinate and keep track of home treatments recommended by their child's medical team. Such home treatment is likely to include respiratory therapy, a strict diet, regular exercise and an extensive regimen of medications. As you get older it is important for you to start taking on some of these responsibilities yourself, so you will be prepared to effectively manage the disease as an adult. As a teen, it may sometimes be difficult to maintain a daily treatment schedule. Even though you may not immediately feel worse for skipping a day of treatment, the possibility of later complications increases.

Some cystic fibrosis treatment centers provide specific transition programs that educate young cystic fibrosis patients about managing your own health and guide you through the transition from pediatric to adult cystic fibrosis care. There are many other strategies you and your physician may chtoose to stay vigilant about your health.

Consider exploring the following websites for more information:

• WebMD Video — Managing Cystic Fibrosis
• Connecticut Children's Medical Center — Cystic Fibrosis Adult Transition Programs
• Lucille Packard Stanford Children's Hospital — Center of Excellence for Pediatric Cystic Fibrosis and Pulmonary Diseases
• Children's Hospital Boston — Adult Transition
• BC Children's Hospital in Vancouver — Cystic Fibrosis Transition Progam
• Yale Medical Group — Cystic Fibrosis Program, Adult