Enticing your 6-month-old to eat her enzyme-sprinkled applesauce is one thing. Telling your teenage daughter that she has to get off the phone and do her treatments, however, is a completely different story. Transition. It is fabulous. It is frightening. And, for many parents of children with CF, it is fast approaching.
“I figure if I start now, maybe by the time he's 18 and goes to college or, wherever he might choose to go, he might take care of his own needs,” says Mary, whose 13-year-old son, Matt, is just now starting to take responsibility for some parts of his treatment.
According to data from the Cystic Fibrosis Foundation, as of 2006, adults made up nearly 45 percent of the CF population in the U.S. In 1990, the number was just 30 percent.4 That growing adult population creates issues on both a micro and a macro level.
At its most basic level are families, like Mary's, who are helping their children navigate toward an independent life. They want their kids to realize the importance of nutrition, exercise and treatments – the trilogy of power in the quest for longer, healthier lives. That's no small order when dealing with 18 year olds.
The next step is in ordering the meds and stuff. I want to include him in this,” says Mary. “So when he does need to do it, he knows what it means to manage his disease and he'll be able to take on that role when the time comes, and not be hit with it all at once.”
At the macro level, the exploding adult population in the CF community is highlighting an apparent shortage of adult care physicians. The Cystic Fibrosis Foundation is responding to the need by implementing the P.A.C.E. Program (live link to the “Keeping P.A.C.E.” article on the P & C site) to encourage more new doctors to pursue a career in adult cystic fibrosis care. Mary says she hopes the program makes an impact – quickly.
“Right now we have a team of pediatric pulmonologists, and a nurse, and a dietitian, and a respiratory therapist, who are all geared at pediatric care for cystic fibrosis patients. When patients get to be adult age, they don't have that team in our area,” says the mother of three.
Of course, health care facilities vary from city-to-city and state-to-state, but everyone involved with the care of CF patients knows there is a need for more adult care docs. Mary, whose son, Matt, is still five years away from transitioning into adult care, says she is keeping an eye on the situation and poised to help if there is anything she can do.
“I have been talking with a few parents and we are all willing to do whatever it takes to get an adult CF care unit in our area, where our children would be serviced,” she says. And from the look of determination on her face, there is little doubt how serious she is.
- 4 Cystic Fibrosis Foundation (2008). Patient Registry Annual Data Report 2006.