Cancer can be fatal.
So can cystic fibrosis.
While there are thousands of support groups for people fighting cancer around the United States, the 30,000 Americans suffering from cystic fibrosis have only one — the support group at the University of Wisconsin Hospital.
Though support groups may seem like a logical approach to helping people cope with CF, the risk of patients infecting each other with harmful pathogens has led doctors across the country to advise against commingling.
"The interaction of patients with cystic fibrosis could lead to person-to-person transmission of respiratory pathogens that are potentially severe," said Philip Farrell, a UW professor who researches the disease.
According to Farrell, a person with cystic fibrosis is persistently infected with certain types of germs in the respiratory tract that the average person most likely does not have.
"This is why the cystic fibrosis camps were closed — because of the demonstration through research that patients could cross-infect each other," Farrell said. "Social interactions have to be monitored very carefully."
But three years ago, the pulmonary department at UW Hospital formed the first and only support group for cystic fibrosis patients nationwide as a way to help them learn from each other how to cope with the disease.
"We knew there was a strong need for people to get together and learn from each other," said Damien Wilson, a social worker at UW Hospital who helped form the group. "Basically it comes down to the fact that this is a support group for adults that has excellent infection controls."
According to Wilson, the hospital takes numerous precautions to prevent cross-infection, including following the national standard that patients should not sit within three feet of each other and conducting a monthly study on patients' lungs to make sure they are free of pathogens.
"There are all sorts of layers of good infection control there," Wilson said. "It's only controversial in that it hasn't been done by the other care centers nationally."
Wilson said the group helps patients talk to other patients about courses of action they may be considering, such as a lung transplant or the options involved with having children.
"A lot of people learn a great deal about whether they should make those choices," Wilson said.
The hospital provides two support group options for its CF patients. The couples group meets every two months, with approximately 20 attendees, and an individual group meets on the off-month with about half as many patients.
Wilson said UW Hospital recently put together a 20-minute DVD featuring the group for the North American Cystic Fibrosis Conference in order to prove groups can be formed if good infection controls are practiced.
The DVD is also aimed toward cystic fibrosis patients to help them learn what life could be like down the road.
"It is a beautiful training tool for family members or kids with cystic fibrosis," Wilson said.
The DVD will soon be available for purchase online for $25. Proceeds will help fund the cystic fibrosis support group.