hello, my name is carissa. i am a freshman in high school and am doing a report on cystic fibrosis and i was wondering if anyone would be willing to give me some information about or or if anyone wanted to share there story with me. i would really appreciate it. thank you so much.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
cf help
- Thread starter anonymous
- Start date
Emily65Roses
New member
*nods along with Julie*
Not having a go at the last few posts but I think that you shouldn't be too harsh on the orginal post my BF has CF and when I first heard that he had CF I had no idea what it was. I know that you must get sick of people saying that they are doing a report and they need info but I know a lot of people who wouldn't have a clue what CF is and isn't it better that you educate them on it then telling them to stop annoying you I organised to sell red roses on CF day at my work and I was amazed how many people didn't know about it and I felt good telling them about it when they were donating.
Cheers
Samantha
Cheers
Samantha
samantha....i understand where you are coming from but julie pointed out the fact that maybe they should try reading all the other posts first because i'm certain carissa will find what she wants by looking at these ! and then come to us for further assistance if needs be !?
I also think people should be made more aware of the condition, as i know this subject has also been bought up before. i.e pupils should be taught about it in depth at school etc. We studied it briefly at school but it seems silly, it is after all the most common inherited disease.
emma 18 cf uk
I also think people should be made more aware of the condition, as i know this subject has also been bought up before. i.e pupils should be taught about it in depth at school etc. We studied it briefly at school but it seems silly, it is after all the most common inherited disease.
emma 18 cf uk
I beleive that if Carissa or any of the many research papers that have come on the forum really wanted to "research" they would go through all the threads with posts first then if they had further questions they could then repost. It's not that we don't want to educate them but it's that we don't feel we should have to place "our" story in here a hundred times. People already know "my" story. Because we've all been through it several times on here. When ever I tell peple on here I'm a late diagnosis, I feel like it becomes dis-interesting. Whether they feel that or not. It's like when your friend or relatives repeat the same story to you when you heard it many times over. It's the same feeling even though were typing it. So we're just saying if you really want to research than go for it. But I dont feel we should have to go over it and over it till we're all blue in the face. That's all were saying, I don't beleive anyone meant mean feeling toward her or anyone because they want to know.<img src="i/expressions/face-icon-small-happy.gif" border="0">
vickysmommy
New member
I too think that you shouldnt be so annoyed with anyone asking about CF. Its good to get a story from someone that really has it rather then reading it in books. Books dont really know what we go through. So I'm also glad to tell my story so ask me anything you want to know
this is carissa (the girl with the report) and i understand that many people do want to tell me to just shut up and go away, but if it is so annoying that i want to help educate people on this topic, just dont write me back. i've done a lot of research on cystic fibrosis, all i wanted was some positive feedback on cystic fibrosis and how it affects peoples lives. i'm sorry for not being clear in the first place. thank you so much sarah for your comment.
Specific questions (after some research) are wonderful, I have even answered some specific question posts today. But it wasn't a "hi I am researching CF, what is CF" kind of question. The poster had 2 specific questions, and they have not been posted or answered recently on this site. That is the difference. The general question posted above is something that could be answered by reading one or two topics on the adult, families, teenager or young adult sections. That is the issue.
Julie
Julie
Carissa, the other thing is that when some of us do take the time to write back to posters with questions, the origional poster NEVER takes the time to thank any of us for our responses. Not saying that you would do that, but from the experience most of us have had, I (and others will probably agree) feel that the people coming to this board and asking those generalized questions are ungrateful for our responses. That is part of my personal reason.
Julie
Julie
vickysmommy
New member
Im not sure about the gene thing but yes my daughter is a carrier, any child of a CF patient will be a carrier, no matter what