Re: My friend has Cystic Fibrosis - Really worried

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[ Home ] [ Follow Ups ] [ Post Followups ] [ FAQ ] [ Back to Messages ] Message Posted by Melissa on October 11, 2000 at 06:00:58: In Reply to: Re: My friend has Cystic Fibrosis - Really worried posted by Jane on October 10, 2000 at 19:00:48: : : 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 If you are afraid of embarrasing your friend with questions is it because she herself is embarrased? I am a 32 year old with CF. I have a 2 1/2 year old daughter & a terrific husband. While I was in school I was more embarrased about the uneducated people making comments than those answering any direct questions regarding my CFor my cough or my small (scrawny as people would call it) build. People would tell me to quit smoking when they heard my cough & it was very embarrasing. I learned to address it right then by advising them without a lot of detail that I have a non contagious illness that causes the cough etc. Then if they wanted more information I would would supply it, but at least they were on alert that their comments were rude or just ignorant. Learning more about CF is the BEST thing you can do for your friend. If she is ashamed to discuss it with you, please assure her that its nothing to be ashamed of & that it is what makes her so special also. Good Luck! Follow Ups Post a Followup If you post a followup: Please review our message board guidelines. Please keep messages on topic. Advertising messages are not permitted on this board. Please report any violations to webmaster@healthboards.com Name: E-Mail (optional): please note: your e-mail address will be visible for others to see. Subject: Message: (add your reply here) : : : 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 : If you are afraid of embarrasing your friend with questions is it because she herself is embarrased? I am a 32 year old with CF. I have a 2 1/2 year old daughter & a terrific husband. While I was in school I was more embarrased about the uneducated people making comments than those answering any direct questions regarding my CFor my cough or my small (scrawny as people would call it) build. People would tell me to quit smoking when they heard my cough & it was very embarrasing. I learned to address it right then by advising them without a lot of detail that I have a non contagious illness that causes the cough etc. Then if they wanted more information I would would supply it, but at least they were on alert that their comments were rude or just ignorant. Learning more about CF is the BEST thing you can do for your friend. If she is ashamed to discuss it with you, please assure her that its nothing to be ashamed of & that it is what makes her so special also. Good Luck! Optional Link URL: Link Title: Optional Image URL: Note: The moderator has the right to delete any message deemed inappropiate for this board. Repeat violators of healthboards policy will be permanently barred from the boards. Reminder - No ad messages permitted!

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