Cystic fibrosis is a chronic hereditary disease which affects the respiratory and digestive systems. Research since the 1960s has brought about many drug therapies that have made the lives of persons with CF significantly longer and better than what was expected 50 years ago.
Many children with CF participate in sports. Generally, reasonable physical exercise is considered beneficial and it's more fun than physiotherapy alone, especially for kids.
There have been summer camps for children with cystic fibrosis for decades. However, the growing fear of bacterial contamination has caused many people to think twice about going to camp. A large number of CF camps have been cancelled to avoid exposing children to bacteria which could give them fatal infections.
The Canadian Cystic Fibrosis Foundation's 2006 Grants and Awards Guide says, at page 12:
"In light of the risk of cross-infection with pathogenic bacteria, the Canadian Cystic Fibrosis Foundation does not endorse CF camps..."
This is not an unusual position. The American Cystic Fibrosis Foundation has an explicit policy to exclude persons infected with Burkholderia cepacia - a complex of bacteria which is very dangerous for people with CF - from Foundation functions. This policy is in place because the Foundation believes the risk to anyone with CF is too great to take chances with. That is not the same as banning camps, but on the ACFF's website, there is no mention of a summer camp.
There are many bacteria which can harm people with CF. B. cepacia is one group which has received significant attention because of its resistance and its capability for causing terrible harm. They are hardy bacteria and can survive for 24 hours on a surface such as a tabletop or wall. They are resistant to most common cleaning disinfectants and antibiotics. They live in moist places - even in some soils. And they spread from person to person through casual contact - sharing drinking cups and silverware, living in the same space - things that are almost inevitable at summer camp.
Imagine what a great opportunity a children's summer camp provides for an outbreak.
On the other hand...
Some organizations have moved away from summer camps for groups of children, toward family camps where children with CF sleep and eat with their own families but have the option of mixing with other families if they choose.
Reseachers from Israel published a paper in 2002, "Effects of an Intensive 4-Week Summer Camp on Cystic Fibrosis", which found a number of benefits from participating in a camp in the Swiss mountains, with daily hikes and socializing. None of the participants had B. cepacia before the camp, and none developed it during camp. The paper talks specifically about the weight gain for some of the children, and suggests that the combination of exercise, good company, and encouragement from the staff may all have had a positive effect on the children's appetites.
There are various happy stories on the internet from adults who went to CF camps as children.
There are still CF summer camps in operation, although many have been discontinued over the years due to the fear of cross-contamination.
What does it all mean?
The decision to send a child to summer camp is a difficult one for any parent, but when the child has special needs, the medical factors have an even higher importance.
Many parents of children with CF are very well-informed about all the current developments, including whatever progress has been made in the search for a cure for B. cepacia infection. This article can only point out that there is a reason CF camps are no longer as common as before, and experts such as the Canadian Cystic Fibrosis Foundation and its U.S. counterpart both express concerns about the spread of bacteria.
On the other hand, the benefits of socializing, spending time in the fresh air, exercising and having fun all add a great deal to a person's quality of life, especially for children.
In consultation with expert medical advice, a family with CF can come up with a good compromise by focusing on the question of how to get the benefits without incurring undue risk. Medical advice is essential, of course.
But let's say that after considering everything, you decide to design a low-risk fun experience for your family in the outdoors. Backpackers and campers are made, not born! Check out Suite101's other Outdoor and Adventure topics and you will find lots of information on backpacking and other activities to get you started. As the Israeli researchers found, a daily hike in the mountains was a great appetite stimulant.
