Where do you tell people to look for CF info?

mamaScarlett

Active member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AleksandraKaczynska</b></i>

If they are not intereset and seem not to believe us or take Asia's cf lightly - since Asia is in good health - I usually say something very simple and send them to the internet without telling where to look. These people seem to need scaring - it may sound horrible - but it works. </end quote><br>I agree 100%.<br>While I don't feel a need to explain the hard facts to aquaintences, I get so irritated at close friends and really irritated at relatives that should know better but don't. I especially see this with in law relatives, bc they haven't know me since birth when kids with cf didn't live past 12-they diminish what I have constantly and expect wayyyy too much of me. They've known me for ten years now, so there's really no excuse since they have seen me sick plenty of time. I can't tell you how many times I've wanted to yell "Google it!" to people. <br>And yes I've had the desire numerous times to tell the worst case scenario of things bc people just seem to think I have asthma or something. <br><br>People in general just don't know enough about Cf. I used to tell people that only about 30,000 americans have Cf. I don't do that anymore bc I think it makes people think its this weirdo ultra rare thing that is so rare they don't have to worry about it. #1-I don't believe that only 30,000 americans have it, I think its much more than that. #2-Theres tons of carriers out there. <br>
 
So I guess I'm not the only "bad one"<img src="i/expressions/face-icon-small-smile.gif" border="0"> around going and scaring people who don't but should care - like mamscarlett wrote - mostl its some reletives....
But I also use wiki and other local informative pages as a good bases for starting asking questions or for some - for going into details.
 
So I guess I'm not the only "bad one"<img src="i/expressions/face-icon-small-smile.gif" border="0"> around going and scaring people who don't but should care - like mamscarlett wrote - mostl its some reletives....
But I also use wiki and other local informative pages as a good bases for starting asking questions or for some - for going into details.
 
So I guess I'm not the only "bad one"<img src="i/expressions/face-icon-small-smile.gif" border="0"> around going and scaring people who don't but should care - like mamscarlett wrote - mostl its some reletives....
<br />But I also use wiki and other local informative pages as a good bases for starting asking questions or for some - for going into details.
 

Havoc

New member
I think we need to remember that wiki's are there for the public to edit and add pertinent and accurate information about a topic. If you aren't happy with how wikipedia paints CF you should edit it so that it reflects more accurate information. I would also suggest creating your own wiki to serve as a primer for people who are friends or more distant relatives of people with CF that gives well rounded information. It would then be easy to point people to a source that you know is accurate and customized for that audience.
 

Havoc

New member
I think we need to remember that wiki's are there for the public to edit and add pertinent and accurate information about a topic. If you aren't happy with how wikipedia paints CF you should edit it so that it reflects more accurate information. I would also suggest creating your own wiki to serve as a primer for people who are friends or more distant relatives of people with CF that gives well rounded information. It would then be easy to point people to a source that you know is accurate and customized for that audience.
 

Havoc

New member
I think we need to remember that wiki's are there for the public to edit and add pertinent and accurate information about a topic. If you aren't happy with how wikipedia paints CF you should edit it so that it reflects more accurate information. I would also suggest creating your own wiki to serve as a primer for people who are friends or more distant relatives of people with CF that gives well rounded information. It would then be easy to point people to a source that you know is accurate and customized for that audience.
 
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cindylou

Guest
I was probably the one who called it alarmist, LOL! In its defense, I think it's been updated since my potential suitors were scared away by it. My main beef with it is that it has some outdated info (or did last time I checked). I do think it's a great resource, though - just not really what I wanted the guys I was dating to see before they talked to me about it.
 
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cindylou

Guest
I was probably the one who called it alarmist, LOL! In its defense, I think it's been updated since my potential suitors were scared away by it. My main beef with it is that it has some outdated info (or did last time I checked). I do think it's a great resource, though - just not really what I wanted the guys I was dating to see before they talked to me about it.
 
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cindylou

Guest
I was probably the one who called it alarmist, LOL! In its defense, I think it's been updated since my potential suitors were scared away by it. My main beef with it is that it has some outdated info (or did last time I checked). I do think it's a great resource, though - just not really what I wanted the guys I was dating to see before they talked to me about it.
 
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cindylou

Guest
I'm with you though. I get frustrated by the "sunshine and daisies" approach, too.
 
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cindylou

Guest
I'm with you though. I get frustrated by the "sunshine and daisies" approach, too.
 
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cindylou

Guest
I'm with you though. I get frustrated by the "sunshine and daisies" approach, too.
 

just1more

New member
FYI, if you want a source of 'facts' about CF, unlike the CFF, their Canadian counterpart publishes their statistics.  Here is a link to their site, as well as one to the most recent published statistics.  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><br><A HREF="http://www.cysticfibrosis.ca">www.cysticfibrosis.ca</A><br><br><A HREF="http://www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf">http://www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf</A><br><br><br>
 

just1more

New member
FYI, if you want a source of 'facts' about CF, unlike the CFF, their Canadian counterpart publishes their statistics. Here is a link to their site, as well as one to the most recent published statistics. 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><br><A HREF="http://www.cysticfibrosis.ca">www.cysticfibrosis.ca</A><br><br><A HREF="http://www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf">http://www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf</A><br><br><br>
 

just1more

New member
FYI, if you want a source of 'facts' about CF, unlike the CFF, their Canadian counterpart publishes their statistics. Here is a link to their site, as well as one to the most recent published statistics. 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><br><A HREF="http://www.cysticfibrosis.ca">www.cysticfibrosis.ca</A><br><br><A HREF="http://www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf">http://www.cysticfibrosis.ca/assets/files/pdf/CPDR_ReportE.pdf</A><br><br><br>
 
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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><div>-----</div><div>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.</div><div><br></div><div>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. </div><div><br></div><div>But the other thing to keep in mind that is so frustrating is that everyone cooks the books. </div>
 
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