Perceptions of CF

[livinglovinggrace]

<br><div>I would be really interested on peoples thoughts about how they feel CF is portrayed in awareness campaigns. Last week was CF week in Australia and although I think the advertising was fantastic Im not sure it goes far enough to educate people about the real CF. </div><div><br></div><div>You can view the ads that were screened at 65rosesday.org.au.</div><div><br></div><div>Sometimes I think the way CF is portrayed now days is as being an pest rather than something life threatening, so often when I talk to people they dont realise how serious CF can be. I know it varies from person to person but still. I guess you dont see breast cancer focussing on the people that live whereas I think CF campaigns are sometimes too positive (at least here in Aus) and that kinda makes me feel a little alienated. I would love to know if that is just my perspective or other people feel that way too.</div><div><br></div><div>If anyone is interested I wrote a blog about this topic this week at livinglovinggrace.blogspot.com. It wasn't really targeted for CF'ers though.</div><div><br></div><div>Anyway would love to see what people think about this idea or im just grouchy lol! Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0"></div>

 

[livinglovinggrace]

<br>I would be really interested on peoples thoughts about how they feel CF is portrayed in awareness campaigns. Last week was CF week in Australia and although I think the advertising was fantastic Im not sure it goes far enough to educate people about the real CF.<br>You can view the ads that were screened at 65rosesday.org.au.<br>Sometimes I think the way CF is portrayed now days is as being an pest rather than something life threatening, so often when I talk to people they dont realise how serious CF can be. I know it varies from person to person but still. I guess you dont see breast cancer focussing on the people that live whereas I think CF campaigns are sometimes too positive (at least here in Aus) and that kinda makes me feel a little alienated. I would love to know if that is just my perspective or other people feel that way too.<br>If anyone is interested I wrote a blog about this topic this week at livinglovinggrace.blogspot.com. It wasn't really targeted for CF'ers though.<br>Anyway would love to see what people think about this idea or im just grouchy lol! Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[livinglovinggrace]

<br>I would be really interested on peoples thoughts about how they feel CF is portrayed in awareness campaigns. Last week was CF week in Australia and although I think the advertising was fantastic Im not sure it goes far enough to educate people about the real CF.<br>You can view the ads that were screened at 65rosesday.org.au.<br>Sometimes I think the way CF is portrayed now days is as being an pest rather than something life threatening, so often when I talk to people they dont realise how serious CF can be. I know it varies from person to person but still. I guess you dont see breast cancer focussing on the people that live whereas I think CF campaigns are sometimes too positive (at least here in Aus) and that kinda makes me feel a little alienated. I would love to know if that is just my perspective or other people feel that way too.<br>If anyone is interested I wrote a blog about this topic this week at livinglovinggrace.blogspot.com. It wasn't really targeted for CF'ers though.<br>Anyway would love to see what people think about this idea or im just grouchy lol! Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[theLostMiler]

I think this is a great topic.

I know some cf'ers that hate any negativity. I dont know if you've ever seen the Canadian CF ads, that say its like drowning on the inside? Some cf'ers get really outraged. I personally think, that its okay. These are the cf'ers that feel like they control their CF, and think others are just doing something wrong when they are sick (which I am not saying isn't true, but it is not universal), at least that is my perception. These ones are just too peppy/positive for me. Sure, they feel great, or they have a personality than can handle the stress of it, but sometimes its just so unhelpful for me to read that.

I know some people get annoyed b/c they think the CF foundation (in the US) uses 'guilt' to lure in donations. But, it doesnt mean that those statistics aren't real for some people, and why not use the help, if the funding isn't there. I have seen a lot of parents that don't like those statistics b/c they dont want people to think their kid is weak, and in the same sense, a person with CF has the same sentiment. I mean, I see a lot of people that pass in their 20s, that is still too young, just because some are living to their 40s and 50s now (not to discount their experience) doesnt mean there aren't the teens and 20's year olds dying all around us.

In the same sense, as a person with CF, you dont want to think negative, but to me, its just being realistic. It is realistically a shitty disease, that a lot of people die FROM at young ages.

So in essence, I didn't go to the site yet, but I imagine I agree with you. CF isn't just rainbows and unicorns.

 

[theLostMiler]

I think this is a great topic.

I know some cf'ers that hate any negativity. I dont know if you've ever seen the Canadian CF ads, that say its like drowning on the inside? Some cf'ers get really outraged. I personally think, that its okay. These are the cf'ers that feel like they control their CF, and think others are just doing something wrong when they are sick (which I am not saying isn't true, but it is not universal), at least that is my perception. These ones are just too peppy/positive for me. Sure, they feel great, or they have a personality than can handle the stress of it, but sometimes its just so unhelpful for me to read that.

I know some people get annoyed b/c they think the CF foundation (in the US) uses 'guilt' to lure in donations. But, it doesnt mean that those statistics aren't real for some people, and why not use the help, if the funding isn't there. I have seen a lot of parents that don't like those statistics b/c they dont want people to think their kid is weak, and in the same sense, a person with CF has the same sentiment. I mean, I see a lot of people that pass in their 20s, that is still too young, just because some are living to their 40s and 50s now (not to discount their experience) doesnt mean there aren't the teens and 20's year olds dying all around us.

In the same sense, as a person with CF, you dont want to think negative, but to me, its just being realistic. It is realistically a shitty disease, that a lot of people die FROM at young ages.

So in essence, I didn't go to the site yet, but I imagine I agree with you. CF isn't just rainbows and unicorns.

 

[theLostMiler]

I think this is a great topic.
<br />
<br />I know some cf'ers that hate any negativity. I dont know if you've ever seen the Canadian CF ads, that say its like drowning on the inside? Some cf'ers get really outraged. I personally think, that its okay. These are the cf'ers that feel like they control their CF, and think others are just doing something wrong when they are sick (which I am not saying isn't true, but it is not universal), at least that is my perception. These ones are just too peppy/positive for me. Sure, they feel great, or they have a personality than can handle the stress of it, but sometimes its just so unhelpful for me to read that.
<br />
<br />I know some people get annoyed b/c they think the CF foundation (in the US) uses 'guilt' to lure in donations. But, it doesnt mean that those statistics aren't real for some people, and why not use the help, if the funding isn't there. I have seen a lot of parents that don't like those statistics b/c they dont want people to think their kid is weak, and in the same sense, a person with CF has the same sentiment. I mean, I see a lot of people that pass in their 20s, that is still too young, just because some are living to their 40s and 50s now (not to discount their experience) doesnt mean there aren't the teens and 20's year olds dying all around us.
<br />
<br />In the same sense, as a person with CF, you dont want to think negative, but to me, its just being realistic. It is realistically a shitty disease, that a lot of people die FROM at young ages.
<br />
<br />So in essence, I didn't go to the site yet, but I imagine I agree with you. CF isn't just rainbows and unicorns.

 

[mamaScarlett]

My feeling is that in the U.S it really isn't in the public, not enough at least. And it seems to still be viewed by some as a mainly childhood disease that affects a small group.<br>

 

[mamaScarlett]

My feeling is that in the U.S it really isn't in the public, not enough at least. And it seems to still be viewed by some as a mainly childhood disease that affects a small group.<br>

 

[mamaScarlett]

My feeling is that in the U.S it really isn't in the public, not enough at least. And it seems to still be viewed by some as a mainly childhood disease that affects a small group.<br>

 

[ej0820]

I agree with mamascarlett. I don't think it's public enough in the US, positive or negative. I mean, I think back to ER visits at my hospital that has my CF center and I can tell you that 90% of the people that work there only know that "CF patients have to have Dr. Stern paged". They don't even know what it is. Same goes for the people all around me. I've had instances where I've had to disclose my CF to employers and/or teachers and just about every single one of them "have head of it, what is it?". I've come across people who are under the impression that it is a sweating disorder.

 

[ej0820]

I agree with mamascarlett. I don't think it's public enough in the US, positive or negative. I mean, I think back to ER visits at my hospital that has my CF center and I can tell you that 90% of the people that work there only know that "CF patients have to have Dr. Stern paged". They don't even know what it is. Same goes for the people all around me. I've had instances where I've had to disclose my CF to employers and/or teachers and just about every single one of them "have head of it, what is it?". I've come across people who are under the impression that it is a sweating disorder.

 

[ej0820]

I agree with mamascarlett. I don't think it's public enough in the US, positive or negative. I mean, I think back to ER visits at my hospital that has my CF center and I can tell you that 90% of the people that work there only know that "CF patients have to have Dr. Stern paged". They don't even know what it is. Same goes for the people all around me. I've had instances where I've had to disclose my CF to employers and/or teachers and just about every single one of them "have head of it, what is it?". I've come across people who are under the impression that it is a sweating disorder.

 

[entropy]

If you want to understand the public's general perception of CF, think about YOUR perception of an illness that you don't have but hear about sometimes.
<br>
<br>For example, multiple sclerosis, lupus, leukemia... etc. Assuming the person doesn't have any of these illnesses, to them, the illness is not reality to them, but rather a vague concept of an illness which causes overall bad health. Think about how an average person would be made aware of a disease; usually through a TV ad, a magazine ad, internet, or maybe they know someone that has CF but haven't educated themselves. To these sort of people, "CF" or "MS" or "lupus" is just a name that is associated with some imagery or possibly emotion that was imparted to them from whatever awareness campaign they saw or heard (for example, when someone who doesn't have CF and is uneducated about CF hears "CF", they probably remember that CF was that rare disease they heard about in a magazine insert or on a story on the local news). For the most part, people have no idea what CF is. CF is grouped along with various other illnesses that seem to evade public awareness for the most part. It is one of the "specialty" diseases that does get some recognition in the media, probably because it mostly effects children and young adults. But aside from that, the public's perception of CF is the same as the public's perception of almost every other topic that doesn't immediately affect their lives; uninformed, sometimes to the point of being discriminatory. Unfortunately, people generally couldn't care less about ANYTHING (diseases included) which don't directly affect their lives. There are only 30,000 of us. CF is not an epidemic, it isn't controversial, it has no ethical or moral implications (unlike diseases like AIDS, cancer from tobacco use, etc.), and therefore, true knowledge and education in regards to CF is something left to the medical professionals and the CF patient and their immediate family.<div><br></div><div>and to answer your question directly, CF is mostly portrayed as just another incurable (but treatable) illness.  It is what is is... although I think that what the awareness campaigns are mainly trying to portray is that this illness is worthy of your donations. </div>

 

[entropy]

If you want to understand the public's general perception of CF, think about YOUR perception of an illness that you don't have but hear about sometimes.
<br>
<br>For example, multiple sclerosis, lupus, leukemia... etc. Assuming the person doesn't have any of these illnesses, to them, the illness is not reality to them, but rather a vague concept of an illness which causes overall bad health. Think about how an average person would be made aware of a disease; usually through a TV ad, a magazine ad, internet, or maybe they know someone that has CF but haven't educated themselves. To these sort of people, "CF" or "MS" or "lupus" is just a name that is associated with some imagery or possibly emotion that was imparted to them from whatever awareness campaign they saw or heard (for example, when someone who doesn't have CF and is uneducated about CF hears "CF", they probably remember that CF was that rare disease they heard about in a magazine insert or on a story on the local news). For the most part, people have no idea what CF is. CF is grouped along with various other illnesses that seem to evade public awareness for the most part. It is one of the "specialty" diseases that does get some recognition in the media, probably because it mostly effects children and young adults. But aside from that, the public's perception of CF is the same as the public's perception of almost every other topic that doesn't immediately affect their lives; uninformed, sometimes to the point of being discriminatory. Unfortunately, people generally couldn't care less about ANYTHING (diseases included) which don't directly affect their lives. There are only 30,000 of us. CF is not an epidemic, it isn't controversial, it has no ethical or moral implications (unlike diseases like AIDS, cancer from tobacco use, etc.), and therefore, true knowledge and education in regards to CF is something left to the medical professionals and the CF patient and their immediate family.<br>and to answer your question directly, CF is mostly portrayed as just another incurable (but treatable) illness. It is what is is... although I think that what the awareness campaigns are mainly trying to portray is that this illness is worthy of your donations.

 

[entropy]

If you want to understand the public's general perception of CF, think about YOUR perception of an illness that you don't have but hear about sometimes.
<br>
<br>For example, multiple sclerosis, lupus, leukemia... etc. Assuming the person doesn't have any of these illnesses, to them, the illness is not reality to them, but rather a vague concept of an illness which causes overall bad health. Think about how an average person would be made aware of a disease; usually through a TV ad, a magazine ad, internet, or maybe they know someone that has CF but haven't educated themselves. To these sort of people, "CF" or "MS" or "lupus" is just a name that is associated with some imagery or possibly emotion that was imparted to them from whatever awareness campaign they saw or heard (for example, when someone who doesn't have CF and is uneducated about CF hears "CF", they probably remember that CF was that rare disease they heard about in a magazine insert or on a story on the local news). For the most part, people have no idea what CF is. CF is grouped along with various other illnesses that seem to evade public awareness for the most part. It is one of the "specialty" diseases that does get some recognition in the media, probably because it mostly effects children and young adults. But aside from that, the public's perception of CF is the same as the public's perception of almost every other topic that doesn't immediately affect their lives; uninformed, sometimes to the point of being discriminatory. Unfortunately, people generally couldn't care less about ANYTHING (diseases included) which don't directly affect their lives. There are only 30,000 of us. CF is not an epidemic, it isn't controversial, it has no ethical or moral implications (unlike diseases like AIDS, cancer from tobacco use, etc.), and therefore, true knowledge and education in regards to CF is something left to the medical professionals and the CF patient and their immediate family.<br>and to answer your question directly, CF is mostly portrayed as just another incurable (but treatable) illness. It is what is is... although I think that what the awareness campaigns are mainly trying to portray is that this illness is worthy of your donations.

 

[adillsworth]

I agree that it's not out there enough or at all. I don't think I've ever seen a commercial about CF. I tried for a month and a half to get the local news stations ( there are two) to cover the walk-a-thon and never got a respond from them. You can email them story suggestions and they are supposed to get back with you. I did notice that one channel did a five second story so I guess that's something.(We missed it because we were in the hosiptal with <STRONG>Pseudomonas</STRONG>)  One problem is the university graduates the same weekend but the other big story was someones backyard was sinking. We live in coal mine country what do you expect. It's just very, very upsetting.

 

[adillsworth]

I agree that it's not out there enough or at all. I don't think I've ever seen a commercial about CF. I tried for a month and a half to get the local news stations ( there are two) to cover the walk-a-thon and never got a respond from them. You can email them story suggestions and they are supposedto get back with you.I did notice that one channel did a five second story so I guess that's something.(We missed it because we were in the hosiptal with <STRONG>Pseudomonas</STRONG>) One problem is the university graduates the same weekend but the other big story was someones backyard was sinking. We live in coal mine country what do you expect. It's just very, veryupsetting.

 

[adillsworth]

<BR>I agree that it's not out there enough or at all. I don't think I've ever seen a commercial about CF. I tried for a month and a half to get the local news stations ( there are two) to cover the walk-a-thon and never got a respond from them. You can email them story suggestions and they are supposedto get back with you.I did notice that one channel did a five second story so I guess that's something.(We missed it because we were in the hosiptal with <STRONG>Pseudomonas</STRONG>) One problem is the university graduates the same weekend but the other big story was someones backyard was sinking. We live in coal mine country what do you expect. It's just very, veryupsetting.

 

[mamerth]

I think it is a lack of "enough" information out there.

I recently wrote several blog posts at my domestic blog about Cystic Fibrosis (during CF Awareness Month). The people who were brave enough to leave comments said they thought CF was ONLY a lung disease.

 

[mamerth]

I think it is a lack of "enough" information out there.

I recently wrote several blog posts at my domestic blog about Cystic Fibrosis (during CF Awareness Month). The people who were brave enough to leave comments said they thought CF was ONLY a lung disease.