For Kayla Small and Maggie Marcus, being roommates is "Cystic fibrosis not hookup each other" living dangerously. The two college-age friends have a rare disease that means sitting side by side in a car, sharing a glass or indulging in a bar-side Generation Y-style kiss could put their lives at risk. Small and Marcus suffer from cystic fibrosis, a genetic disease that affects about 1 in 2, white Americans.
Other races can be affected, but the majority of cases are found among those of European descent. CF is characterized by extremely thick mucus that clogs the lungs and digestive tract, causing respiratory and digestive problems. The viscous sputum can make breathing difficult, but it's the ideal environment for bacteria of all kinds to thrive and form large antibiotic-resistant colonies. Healthy people don't get sick when exposed to the bacteria of a person with CF.
Trouble starts when bacteria is passed from one CF sufferer to another, and the consequences can be deadly. CF patients generally start off with comparatively mild infections like staph, but as the disease progresses, the strains that take root become progressively more virulent.
Even with regular checkups, one can never be absolutely sure what kind of bacteria is growing at a given moment, and if Cystic fibrosis not hookup each other person with a particularly vicious bacteria passes it to someone who doesn't have it yet, he or she can inadvertently quicken the other's decline. The bacteria of concern to CF patients are easily contracted, so doctors advise patients to keep a minimum safe distance of three feet between each other at all times.
You can't put everyone in spacesuits. Yet Small, a published writer and a Columbia University graduate, subscribes to a personal philosophy that values intimacy with others who share her experience above all else -- even if it could mean she will get sicker faster.
Bill Taub, a clinical social worker at Duke University Cystic Fibrosis Center, estimates that about 10 percent of CF patients he has worked with have expressed similar feelings. Some people feel they need to ignore the restrictions in service to the quality of their lives. I am very sympathetic with her experience.
That doesn't mean I agree with it. Most of the outlaws are young, somewhere between 13 and 25, by Taub's estimate. The mean life expectancy for CF patients is 37, but doctors say it is becoming increasingly common for patients to live into their 40s and 50s -- an enormous leap in odd years.
When the disease was first identified, children who contracted it rarely made it past the age of 2.
But averages don't mean much when you see your friends die young. A girl Small knew as a teenager died at 24, and a boy she met on the Internet died at 22 waiting for a lung transplant.
She says she broke off contact with him out of fear of witnessing the death of one of her best friends. She's trying to work through her fear.
She's even thinking about going to visit an ex-boyfriend Cystic fibrosis not hookup each other CF who told her to stay away because he'd contracted cepacia -- the category of bacteria that contains the strain that signals the end of the line for many. Small and her BFF -- best friend forever, in text parlance -- are determined to spend as much time together as possible.
They play Marco-Polo in the supermarket -- "we go to different aisles and find each other by the sound of coughing" -- have slightly ironic slumber parties at their parents' homes and aren't above making out at the bar after a few drinks. Her mom doesn't get it, and Small says it upsets her seeing them Cystic fibrosis not hookup each other beds, clothes and coffee cups.
I thought you had goals,'" Small said. She doesn't understand why we can't maintain our friendship and sleep in different rooms, or sit in the car with one in front and one in back.
This is what I've always wanted -- intimacy. Isolation wasn't always an issue for people with cystic fibrosis. Before the medical community realized the danger, patients shared rooms in hospitals, went on special overnight field trips, attended summer camps especially for them. Thomas Murphy, director of Duke University's Cystic Fibrosis Center, says things changed in the early s when data started trickling in from treatment clinics around the world.