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.
Is cross-infection a problem is CF?
She's even thinking about going to visit an ex-boyfriend with 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 sharing 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.
Relatively healthy people with CF were getting inexplicably sicker and dying. It appeared to have something to do with close proximity. Because people with CF have to go to clinics regularly to get checked out, they got to know each other. They made friends, made dates, sometimes married.
Segregation is not good for patients with cystic fibrosis
Researchers figured out that among the adult populations, patients were sharing more than understanding and love, they were sharing bacteria -- sometimes trading up. Murphy says he was instrumental in closing North Carolina's Camp Kaleidoscope -- a beloved place for kids with serious illness -- to children with CF in , but there were hundreds of such camps. She says they loved it. Yet 20 years later she councils young people to keep each other at arm's length.
You are each fighting your own fight. The dictums are for their protection, and McMullen says the benefits of guidelines outweigh the negatives. But the negatives can't be overlooked. It's harder for people to "get support from each other. It has had an impact.
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Meeting the social needs of sufferers wasn't a problem when cystic fibrosis was first brought to the public's attention: Children weren't expected to live past their second birthdays. People like Joan Finnegan Brooks, 47, wasn't expected to make it to school age. CNN Late one night on Facebook, a girl with cystic fibrosis messaged a boy with cystic fibrosis, and both their lives were changed forever.
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Find out what's happening in the world as it unfolds. A real 'Fault in Our Stars' couple. Katie and Dalton Prager met when they were 18; both had cystic fibrosis. The two wanted to meet even though people with cystic fibrosis can easily share dangerous lung infections. The Pragers were married two years later.
One month after meeting, Dalton had passed a dangerous infection on to Katie. A year after their wedding, the couple were too sick to work and had to quit their jobs. They both needed new lungs.
Cystic Fibrosis Patients on 'Grey's Anatomy' Got a Bum Deal
Dalton had his transplant first. Despite his infection, the transplant in November was a success. Recently, he was hospitalized in St. Louis with pneumonia and a viral infection. He died September 17, , at age After months apart from Dalton, Katie found out she would receive a lifesaving lung transplant. She was able to briefly reunite with her husband afterward.
She died at her home in Kentucky on September Story highlights Katie and Dalton met as patients dealing with cystic fibrosis Two years later, they were married Dalton received a lung transplant, but Katie is still waiting. The girl, Katie Donovan, read that the boy, Dalton Prager, was very sick. No, you don't, Katie wrote back, and told Dalton a bit about herself. Like him, she was 18, and "my breathing is pretty crappy and I see you are in the hospital.
I know it sucks! But you just gotta stay strong. Messages between the two flew back and forth. The most tragic love story most of us have ingrained in our memories is Romeo and Juliet. Not a tale of two cystic fibrosis CF patients. Well, at least that was most likely the case until last night Grey's Anatomy might just be a primetime drama, but it sure has a way of turning our attention to tragic medical situations that would otherwise fly under the radar.
The most recent episode featured a couple who both suffered from cystic fibrosis , a genetic disease that causes sticky mucus to build up in the lungs and digestive tract.
The Danger of Cross Infections for Those Living With Cystic Fibrosis - Cystic Fibrosis News Today
Two CF patients in a relationship is a no-no to the medical community. That's because they both carry dangerous bacteria that can kill the other.
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It seems like the Grey's writers had some interesting timing with this episode, because now there's new hope for CF