Where do you tell people to look for CF info?

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tarheel

Guest
FYI, I'd kill for CFF to be willing to share theirs given the amount of data they hold onto, but I don't see it happening anytime soon.<br>-----I TOTALLY agree. I am such a statistics person. And if we are part of the CF registry- why can't we see how each center is doing patient by patient and really the hard numbers.<br>Plus I just feel that some of the "statistics" the CFF tries to use now (*clears throat* life expectancy) don't really show the struggle that CF is- but rather further the case of "Statistics lie and liars use statistics" even though that is not what I would personally like to believe.<br>But the other thing to keep in mind that is so frustrating is that everyone cooks the books.
 
T

tarheel

Guest
FYI, I'd kill for CFF to be willing to share theirs given the amount of data they hold onto, but I don't see it happening anytime soon.<br>-----I TOTALLY agree. I am such a statistics person. And if we are part of the CF registry- why can't we see how each center is doing patient by patient and really the hard numbers.<br>Plus I just feel that some of the "statistics" the CFF tries to use now (*clears throat* life expectancy) don't really show the struggle that CF is- but rather further the case of "Statistics lie and liars use statistics" even though that is not what I would personally like to believe.<br>But the other thing to keep in mind that is so frustrating is that everyone cooks the books.
 

krisgabes

New member
I tell people to just ask me any questions that they have about it.  In the end I feel better of them getting the story and answers straight from me rather than googling, etc.  It can lead to some murky waters.  One site leads to one site leads to another.  I've never seen it end at just one information page.  Pretty soon people start asking how it feels to know I  may only have 10 years left on earth lol
 

krisgabes

New member
I tell people to just ask me any questions that they have about it. In the end I feel better of them getting the story and answers straight from me rather than googling, etc. It can lead to some murky waters. One site leads to one site leads to another. I've never seen it end at just one information page. Pretty soon people start asking how it feels to know I may only have 10 years left on earth lol
 

krisgabes

New member
<BR>I tell people to just ask me any questions that they have about it. In the end I feel better of them getting the story and answers straight from me rather than googling, etc. It can lead to some murky waters. One site leads to one site leads to another. I've never seen it end at just one information page. Pretty soon people start asking how it feels to know I may only have 10 years left on earth lol
 

MissAlex27

New member
I agree with all of you that think the CFF website is way too cheerful. I've always found that was the first place people went to when they found out I had CF, and then they thought I was just fine. Either that, or they would google some dire article and call me crying about how I was about to die. Either way is not fun to deal with.

I actually had someone google it recently when they found out I had CF, and they came back and told me "Oh I know exactly what you're going through, I have asthma." Seriously? I don't know how I bit my tongue on that one.

I basically stopped telling anyone at all a few years ago. My boss knows - I had to tell her since I kept getting tune-ups. She comes and visits me in the hospital and sends me cookies and flowers, etc, so she is super supportive! But only a small handful of other people at my work know, and I don't tell new friends for a long time.
 

MissAlex27

New member
I agree with all of you that think the CFF website is way too cheerful. I've always found that was the first place people went to when they found out I had CF, and then they thought I was just fine. Either that, or they would google some dire article and call me crying about how I was about to die. Either way is not fun to deal with.

I actually had someone google it recently when they found out I had CF, and they came back and told me "Oh I know exactly what you're going through, I have asthma." Seriously? I don't know how I bit my tongue on that one.

I basically stopped telling anyone at all a few years ago. My boss knows - I had to tell her since I kept getting tune-ups. She comes and visits me in the hospital and sends me cookies and flowers, etc, so she is super supportive! But only a small handful of other people at my work know, and I don't tell new friends for a long time.
 

MissAlex27

New member
I agree with all of you that think the CFF website is way too cheerful. I've always found that was the first place people went to when they found out I had CF, and then they thought I was just fine. Either that, or they would google some dire article and call me crying about how I was about to die. Either way is not fun to deal with.
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<br />I actually had someone google it recently when they found out I had CF, and they came back and told me "Oh I know exactly what you're going through, I have asthma." Seriously? I don't know how I bit my tongue on that one.
<br />
<br />I basically stopped telling anyone at all a few years ago. My boss knows - I had to tell her since I kept getting tune-ups. She comes and visits me in the hospital and sends me cookies and flowers, etc, so she is super supportive! But only a small handful of other people at my work know, and I don't tell new friends for a long time.
 
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