Where do you tell people to look for CF info?

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tarheel

Guest
So basically I was wondering where you tell people to look if they want to know more info about Cystic Fibrosis. I told people for the longest time to go to the foundation's site- until I read it. It is so upbeat and peppy cheery I felt nauseated. On top of that I felt that for a lot of people (at least the sort of people I engage with that would want more info) there was insufficient scientific "hard numbers" data and a lack of information regarding other things like CFRD that I usually inform people about in passing. Basically, the site just didn't represent the message I want to send to people- that I'm fine and everything will turn out and CF for a fact will be cured tomorrow. Because I'm not, and I for one will never see a cure for my personal CF with this stage of lung involvement. I have termed myself a "realist"   - I don't think it's pessimism to look at facts for what they are. <div><br></div><div>So in the past few months I've actually started telling people to look at the wiki article about it. I read a post on here that someone though it was "alarmist"... and I thought that was a rather interesting way to look at it. I read the Wiki and thought it answered almost any question someone could have- going over transplant and diabetes as well as having many other articles linked to it and sources well cited. </div><div><br></div><div>I'm wondering where you tell people to look for more information.</div><div>Obviously you can't believe everything the internet says and most people have a "go to" reference to tell people "look here for more information about CF" and I'm wondering where your here is. Also, what are your opinions of the way CF is presented at both the above mentioned sources? </div><div><br></div><div>CFF (sunshine and daisies???)</div><div><a href="<A HREF="http://www.cff.org/AboutCF/">http://www.cff.org/AboutCF/</A>"><A HREF="http://www.cff.org/AboutCF/">http://www.cff.org/AboutCF/</A></a></div><div><br></div><div>Wikipedia (doom and gloom???)</div><div><a href="<A HREF="http://en.wikipedia.org/wiki/Cystic_fibrosis">http://en.wikipedia.org/wiki/Cystic_fibrosis</A>"><A HREF="http://en.wikipedia.org/wiki/Cystic_fibrosis">http://en.wikipedia.org/wiki/Cystic_fibrosis</A></a></div><div><br></div><div><br></div><div>Plus- I just have to point out- at least Wikipedia has a picture of a therapy vest. More realistic pic of my life than a doctor's stethoscope looming down over the camera lens.</div>
 
T

tarheel

Guest
So basically I was wondering where you tell people to look if they want to know more info about Cystic Fibrosis. I told people for the longest time to go to the foundation's site- until I read it. It is so upbeat and peppy cheery I felt nauseated. On top of that I felt that for a lot of people (at least the sort of people I engage with that would want more info) there wasinsufficientscientific "hard numbers" data and a lack of information regarding other things like CFRD that I usually inform people about in passing. Basically, the site just didn't represent the message I want to send to people- that I'm fine and everything will turn out and CF for a fact will be cured tomorrow. Because I'm not, and I for one will never see a cure for my personal CF with this stage of lung involvement. I have termed myself a "realist" - I don't think it's pessimism to look at facts for what they are.<br>So in the past few months I've actually started telling people to look at the wiki article about it. I read a post on here that someone though it was "alarmist"... and I thought that was a rather interesting way to look at it. I read the Wiki and thought it answered almost any question someone could have- going over transplant and diabetes as well as having many other articles linked to it and sources well cited.<br>I'm wondering where you tell people to look for more information.Obviously you can't believe everything the internet says and most people have a "go to" reference to tell people "look here for more information about CF" and I'm wondering where your here is. Also, what are your opinions of the way CF is presented at both the above mentioned sources?<br>CFF (sunshine and daisies???)<a href="<A HREF="http://www.cff.org/AboutCF/">http://www.cff.org/AboutCF/</A>"><A HREF="http://www.cff.org/AboutCF/">http://www.cff.org/AboutCF/</A></a><br>Wikipedia (doom and gloom???)<a href="<A HREF="http://en.wikipedia.org/wiki/Cystic_fibrosis">http://en.wikipedia.org/wiki/Cystic_fibrosis</A>"><A HREF="http://en.wikipedia.org/wiki/Cystic_fibrosis">http://en.wikipedia.org/wiki/Cystic_fibrosis</A></a><br><br>Plus- I just have to point out- at least Wikipedia has a picture of a therapy vest. More realistic pic of my life than a doctor's stethoscope looming down over the camera lens.
 
T

tarheel

Guest
So basically I was wondering where you tell people to look if they want to know more info about Cystic Fibrosis. I told people for the longest time to go to the foundation's site- until I read it. It is so upbeat and peppy cheery I felt nauseated. On top of that I felt that for a lot of people (at least the sort of people I engage with that would want more info) there wasinsufficientscientific "hard numbers" data and a lack of information regarding other things like CFRD that I usually inform people about in passing. Basically, the site just didn't represent the message I want to send to people- that I'm fine and everything will turn out and CF for a fact will be cured tomorrow. Because I'm not, and I for one will never see a cure for my personal CF with this stage of lung involvement. I have termed myself a "realist" - I don't think it's pessimism to look at facts for what they are.<br>So in the past few months I've actually started telling people to look at the wiki article about it. I read a post on here that someone though it was "alarmist"... and I thought that was a rather interesting way to look at it. I read the Wiki and thought it answered almost any question someone could have- going over transplant and diabetes as well as having many other articles linked to it and sources well cited.<br>I'm wondering where you tell people to look for more information.Obviously you can't believe everything the internet says and most people have a "go to" reference to tell people "look here for more information about CF" and I'm wondering where your here is. Also, what are your opinions of the way CF is presented at both the above mentioned sources?<br>CFF (sunshine and daisies???)<a href="<A HREF="http://www.cff.org/AboutCF/">http://www.cff.org/AboutCF/</A>"><A HREF="http://www.cff.org/AboutCF/">http://www.cff.org/AboutCF/</A></a><br>Wikipedia (doom and gloom???)<a href="<A HREF="http://en.wikipedia.org/wiki/Cystic_fibrosis">http://en.wikipedia.org/wiki/Cystic_fibrosis</A>"><A HREF="http://en.wikipedia.org/wiki/Cystic_fibrosis">http://en.wikipedia.org/wiki/Cystic_fibrosis</A></a><br><br>Plus- I just have to point out- at least Wikipedia has a picture of a therapy vest. More realistic pic of my life than a doctor's stethoscope looming down over the camera lens.
 
A

AleksandraKaczynska

New member
Hi, I'm in dofferent shoes then you ... however II tell people where to look up cf depending on the person and on what I want to achieve.
If I want them - and they - to truely understand the situation my daughter and we are in, I tell them myself about her state and after tell them to look up pages on our home fund - like your's cff.org - or to wiki also - for more info.
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.
And there are also people who don't really want info - just ask - and they don't meat us alot. I just say it's fatal, genetic and it's complicated and if they want info they can look up themselves as it's difficult to explain.
 
A

AleksandraKaczynska

New member
Hi, I'm in dofferent shoes then you ... however II tell people where to look up cf depending on the person and on what I want to achieve.
If I want them - and they - to truely understand the situation my daughter and we are in, I tell them myself about her state and after tell them to look up pages on our home fund - like your's cff.org - or to wiki also - for more info.
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.
And there are also people who don't really want info - just ask - and they don't meat us alot. I just say it's fatal, genetic and it's complicated and if they want info they can look up themselves as it's difficult to explain.
 
A

AleksandraKaczynska

New member
Hi, I'm in dofferent shoes then you ... however II tell people where to look up cf depending on the person and on what I want to achieve.
<br />If I want them - and they - to truely understand the situation my daughter and we are in, I tell them myself about her state and after tell them to look up pages on our home fund - like your's cff.org - or to wiki also - for more info.
<br />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.
<br />And there are also people who don't really want info - just ask - and they don't meat us alot. I just say it's fatal, genetic and it's complicated and if they want info they can look up themselves as it's difficult to explain.
<br />
<br />
 
R

ryry11

New member
When I tell my friends, I tell them NOT to Google it, because my CF is so much milder than the cases that come up on Google searches. I send them to CFF or even the Mayo Clinic site for an overview, and Wikipedia is good, too. I do agree that the CFF site is a bit too cheery, but it gives a solid foundation they can base questions on. My best friend googled it when she found out and it scared her to death.Llater, when I had pleurisy with possible pneumo (it wasn't, thank God) she googled that and freaked out. :/
 
R

ryry11

New member
When I tell my friends, I tell them NOT to Google it, because my CF is so much milder than the cases that come up on Google searches. I send them to CFF or even the Mayo Clinic site for an overview, and Wikipedia is good, too. I do agree that the CFF site is a bit too cheery, but it gives a solid foundation they can base questions on. My best friend googled it when she found out and it scared her to death.Llater, when I had pleurisy with possible pneumo (it wasn't, thank God) she googled that and freaked out. :/
 
R

ryry11

New member
When I tell my friends, I tell them NOT to Google it, because my CF is so much milder than the cases that come up on Google searches. I send them to CFF or even the Mayo Clinic site for an overview, and Wikipedia is good, too. I do agree that the CFF site is a bit too cheery, but it gives a solid foundation they can base questions on. My best friend googled it when she found out and it scared her to death.Llater, when I had pleurisy with possible pneumo (it wasn't, thank God) she googled that and freaked out. :/
 
T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i>

I always explain it myself.</end quote></div>

<div>As do I, but I'm just thinking in those instances where you've explained everything you can think of as best you can but you know people are going to go home and look on the internet anyways. If that makes any sense at all.</div><div>-</div><div>And as for the people who seem to think it's not a "big deal" I usually mention in passing I'm being followed by a transplant clinic. So leaving them to find what the will on the internet isn't too mean to me <img src="i/expressions/face-icon-small-tongue.gif" border="0"> And as a general rule I usually only refer people to Wiki whom I think really genuinely want to understand CF better from physiological standpoint- and mainly because explaining everything myself would probably take upwards of three hours. I probably eventually explain it all, but you know, I don't have three hours to sit down and be like "this is what it is" and use Wiki kind of as a jumping off point for further conversations and questions they or I might not have thought to ask and answer. </div>
 
T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i>

I always explain it myself.</end quote>

As do I, but I'm just thinking in those instances where you've explained everything you can think of as best you can but you know people are going to go home and look on the internet anyways. If that makes any sense at all.-And as for the people who seem to think it's not a "big deal" I usually mention in passing I'm being followed by a transplant clinic. So leaving them to find what the will on the internet isn't too mean to me <img src="i/expressions/face-icon-small-tongue.gif" border="0"> And as a general rule I usually only refer people to Wiki whom I think really genuinely want to understand CF better fromphysiologicalstandpoint- and mainly because explaining everything myself would probably take upwards of three hours. I probably eventually explain it all, but you know, I don't have three hours to sit down and be like "this is what it is" and use Wiki kind of as a jumping off point for further conversations and questions they or I might not have thought to ask and answer.
 
T

tarheel

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i>

I always explain it myself.</end quote>

As do I, but I'm just thinking in those instances where you've explained everything you can think of as best you can but you know people are going to go home and look on the internet anyways. If that makes any sense at all.-And as for the people who seem to think it's not a "big deal" I usually mention in passing I'm being followed by a transplant clinic. So leaving them to find what the will on the internet isn't too mean to me <img src="i/expressions/face-icon-small-tongue.gif" border="0"> And as a general rule I usually only refer people to Wiki whom I think really genuinely want to understand CF better fromphysiologicalstandpoint- and mainly because explaining everything myself would probably take upwards of three hours. I probably eventually explain it all, but you know, I don't have three hours to sit down and be like "this is what it is" and use Wiki kind of as a jumping off point for further conversations and questions they or I might not have thought to ask and answer.
 
M

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></div><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>
 
M

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>
 
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