Pregnancy

5 Ways to Help a Child with Cystic Fibrosis Live a Longer, Healthier Life

Gather a team of specialists

Cystic fibrosis affects more than just the body. The disease has an impact on everything from lifestyle and emotional wellbeing to time-management and the ability to take a breath. As such, you should find and have several different health care specialists on hand in order to help guide your child through both the physical and developmental struggles of growing up with cystic fibrosis.

Since the lungs are the most affected organ system, you should find a small team of health care specialists whose focus of practice is the lungs. Seeking out a pulmonologist who is well-versed in cystic fibrosis can give you regular insight into the exact condition of your child’s lungs and could open the door to cutting edge treatments or therapy options that wouldn’t otherwise be available through a general practitioner. Likewise, a respiratory therapist can make sure that your child is routinely clearing out their lungs and maintaining optimal lung health.

Most children with cystic fibrosis should see a nurse practitioner in addition to their regular doctor. Nurse practitioners typically provide specialized care that supplements regular doctor’s visits with more educational resources, navigational tools, and disease management abilities. Nurse practitioners tend to be more specialized than general practitioners, and also tend to be more informative and facilitative than a doctor could be.

Aside from physical care, it is generally wise to find a social worker and dietician who specialize in cystic fibrosis. Since treatment of the disease can be burdensome and intensive, a social worker can help ensure that children and their families are able to navigate school, doctor’s visits, and anything else that comes up in life. Similarly, since cystic fibrosis complicates traditional diets and consumption, a cystic fibrosis dietician can ensure that a child is properly fed and nourished as they grow.