Living dangerously with cystic fibrosis
March 20th, 2008
From ABC News:
College-age friends Kayla Small and Maggie Marcus are roommates, and they both have cystic fibrosis. Doctors say that CF patients should stay at least three feet apart at all times, to avoid sharing bacteria that could hasten their decline.
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.
“We in the field need to accept that some will make that decision,” he said. “A patient once told me he didn’t want to feel like a leper …”
Small published an article about her life with CF in the New York Times last weekend.
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on Thursday, March 20th, 2008 at 6:40 pm and is filed under chronic illness, cystic fibrosis, medicine, quality of life.
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June 16th, 2008 at 4:08 pm
Although a physician, I agree with Debbie & Kayla. We all have strong needs for & get great benefit from contact, bonding, & respect — with or without physical or developmental or medical disabilities. Access to them is so important.
June 8th, 2008 at 7:09 am
Although the medical field strongly advises against two people with CF having close contact, due to cross-contamination, what happens when you have two kids with CF? I have a son who is 23 and a daughter who is 20, diagnosed at 15 and 12. I think it’s very important for individuals of like illness to be in touch with each other; it’s a bond like no other.