Re: My friend has Cystic Fibrosis - Really worried



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Re: My friend has Cystic Fibrosis - Really worried

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Posted by Jane on October 10, 2000 at 19:00:48:
In Reply to: My friend has Cystic Fibrosis - Really worried posted by Tasha on October 10, 2000 at 11:32:40:
: My name is Tasha and one of my closest friends has CF. She is 21 years old and I am very confused as to how long people with CF live for. She is sometimes really poorly in and out of hospital,then other times out with all her friends drinking. I love her to bits and would like some information on CF as I really don't want to ask her about it as I don't want to embarrass her. Her brother and sister also have the disease. I would appreciate any inforamtion anyone may have.
: Thanks
: TASHA
Hey Tasha,
Check out www.cff.org. It is the official website of the Cystic Fibrosis Foundation. When my son was diagnosed in '98, it was very helpful because it gives concrete facts about exactly what the disease is, life expectancy, treatment and current news on research progress.
CF behaves kind of the way you described it--good days and bad days. The important thing is that you are educating yourself--something that will benefit you and your friend. I wouldn't worry quite so much about embarassing her by talking about it. It is a recessive genetic disease. No one had any control over whether she got it or didn't. When we don't talk about things, often people feel like they are taboo or bad. Having CF is no reflection on anyone's actions and is nothing to be ashamed of. The more we talk about it, the more we educate people, raise awareness and the closer we get to a cure.
I wish more people would take a proactive role like you are. Good luck--and keep on being a good friend.
Jane Mills
janemills@ivillage.com

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Re: My friend has Cystic Fibrosis - Really worried Melissa 06:00:58 10/11/00 (0)

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: : My name is Tasha and one of my closest friends has CF. She is 21 years old and I am very confused as to how long people with CF live for. She is sometimes really poorly in and out of hospital,then other times out with all her friends drinking. I love her to bits and would like some information on CF as I really don't want to ask her about it as I don't want to embarrass her. Her brother and sister also have the disease. I would appreciate any inforamtion anyone may have. : : Thanks : : TASHA : Hey Tasha, : Check out www.cff.org. It is the official website of the Cystic Fibrosis Foundation. When my son was diagnosed in '98, it was very helpful because it gives concrete facts about exactly what the disease is, life expectancy, treatment and current news on research progress. : CF behaves kind of the way you described it--good days and bad days. The important thing is that you are educating yourself--something that will benefit you and your friend. I wouldn't worry quite so much about embarassing her by talking about it. It is a recessive genetic disease. No one had any control over whether she got it or didn't. When we don't talk about things, often people feel like they are taboo or bad. Having CF is no reflection on anyone's actions and is nothing to be ashamed of. The more we talk about it, the more we educate people, raise awareness and the closer we get to a cure. : I wish more people would take a proactive role like you are. Good luck--and keep on being a good friend. : Jane Mills : janemills@ivillage.com
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