In a sometimes sobering presentation, Dr. Margaret DeLano, Allergist and Pediatric Pulmonologist at the Palo Alto Medical Foundation, discussed Pseudomonas cepacia (P. cepacia), a particularly resistant strain of Pseudomonas that is the most devastating bacteria affecting the CF community. In recent months, many journals have published articles demonstrating that CF patients can transmit lung infections to each other and sometimes these infections can be fatal. While there are several varieties of P. cepacia, and not all varieties carry the deadly risks, it is impossible to distinguish between the varieties at this point in time.
While P. cepacia has appeared in the last decade on the East Coast and in Europe, the deadly variety has not been detected in Northern California. However, the problem remains that if this variety does enter the community, it could prove very dangerous. This is of particular concern to Dr. DeLano as CFRI's camp director and head physician in charge of infection control.
The Center for Disease Control is currently trying to determine the risks of contagiousness at cystic fibrosis summer camps in the U.S. Meanwhile, Dr. DeLano has implemented her own strict guidelines for CFRI's summer camp including recent sputum cultures (a child cannot attend if he or she tests positive for any resistant strains of bacteria), individualized drinking containers (it was found that Pseudomonas can live on the outside of a water glass because of moisture), regular handwashing with antibacterial soap at each bathroom visit and after respiratory therapy, and respiratory therapy equipment handled only by the individual user.
On the up-beat side, Dr. DeLano pointed to a University of Miami study that followed children with CF at a nine-day summer camp. It showed that campers gained an average of 1-2 lbs., they showed an increased sense of unity and self-esteem, and good pulmonary function was maintained. At this point, Dr. DeLano feels that the emotional rewards of camp and other community events strongly outweigh the risks.
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