Dana Munsey responds: I'm a 51-year-old with cystic fibrosis and the president of Sunny Shores Sea Camp, a photo of which appeared on AJN's August cover. For 31 years, we've offered an alternative to the traditional camp setting, serving more than 1,000 cystic fibrosis patients and nearly 2,500 family members. All of the professionals who work at our camp—including nurses, physicians, and therapists—donate their time and services.
Here, the word camp is symbolic of fun and camaraderie but not of the bunk beds, tents, and cabins associated with traditional sleepaway camps. One label doesn't describe all organizations, and it should be recognized that responsible socialization among people with cystic fibrosis is acceptable if basic principles of infection control are identified and maintained. Our camp has a screening policy for deadly pathogens, which can be found on our Web site (www.ssscamp.org).
I'm aware of the vital infection control recommendations for people with cystic fibrosis—among them the CFF's advice to discontinue all cystic fibrosis–specific camps to avoid the spread of germs and deadly pathogens—but textbooks, technology, virtual friends, and information can't replace in-person communication. The fear associated with a diagnosis of cystic fibrosis is replaced by hope, as families at our camp meet and discuss the daily rituals that can improve our lives. We educate campers, teaching them how to survive interactions with other people with cystic fibrosis during their visits to clinics and during hospitalizations. They also learn how to avoid the deadly pathogens that can be acquired in the community. Throughout my life, I've attended and supported CFF functions where I've actively socialized with other people with cystic fibrosis. Like the CFF, our camp agrees that education and knowledge are pathways to prevention.
Sunny Shores Sea Camp has taught me that I can safely socialize with people who, like me, suffer from this deadly disease if I take adequate precautions. The greatest gift I can give to the cystic fibrosis community is to use my knowledge, which has come from several sources—including the CFF and our camp—and my personal experience, to perpetuate and fulfill the mission statement of Sunny Shores Sea Camp: "Helping families and mentoring children with cystic fibrosis."