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Not sure what to think about this article
- Thread starter Jane
- Start date
i thought the article was terrible. it is misleading, filled with stereotypes and was quite condescending to CFers, i felt. plus, it's too bad they chose a totally paranoid 'we want our daughter to live in a bubble' family to focus the article on. two thumbs down. what did YOU like about it?
laura, 27, journalist
laura, 27, journalist
ashton2005
New member
very interesting although we cant keep them in a bubble and have to let them live a little.. but altogether it was a very interesting article
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catboogie</b></i>
i thought the article was terrible. it is misleading, filled with stereotypes and was quite condescending to CFers, i felt. plus, it's too bad they chose a totally paranoid 'we want our daughter to live in a bubble' family to focus the article on. two thumbs down. what did YOU like about it?
</end quote></div>
I didn't like it at all. The title was interesting and from it, I expected more.
This part REALLY bugged me:
"Their expectation is not to be the captain of the football team or to run a mile with their peers," Reuben said. "Their expectation may be to do a half-mile at any sort of pace and if they achieve that they have done something fantastic."
i thought the article was terrible. it is misleading, filled with stereotypes and was quite condescending to CFers, i felt. plus, it's too bad they chose a totally paranoid 'we want our daughter to live in a bubble' family to focus the article on. two thumbs down. what did YOU like about it?
</end quote></div>
I didn't like it at all. The title was interesting and from it, I expected more.
This part REALLY bugged me:
"Their expectation is not to be the captain of the football team or to run a mile with their peers," Reuben said. "Their expectation may be to do a half-mile at any sort of pace and if they achieve that they have done something fantastic."
Augustmom0003
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catboogie</b></i>
i thought the article was terrible. it is misleading, filled with stereotypes and was quite condescending to CFers, i felt. plus, it's too bad they chose a totally paranoid 'we want our daughter to live in a bubble' family to focus the article on. two thumbs down. what did YOU like about it?
</end quote></div>
I didn't like it at all. The title was interesting and from it, I expected more.
This part REALLY bugged me:
"Their expectation is not to be the captain of the football team or to run a mile with their peers," Reuben said. "Their expectation may be to do a half-mile at any sort of pace and if they achieve that they have done something fantastic."</end quote></div>
Jane, I agree with you...that part bugged me too. Although, I can't really say that the parents are being totally paranoid. Although I don't go to the extreme like they do...it's extremely tough being a parent and not knowing if you are doing the right thing or not. There's such a fine line. The article wasn't too bad.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catboogie</b></i>
i thought the article was terrible. it is misleading, filled with stereotypes and was quite condescending to CFers, i felt. plus, it's too bad they chose a totally paranoid 'we want our daughter to live in a bubble' family to focus the article on. two thumbs down. what did YOU like about it?
</end quote></div>
I didn't like it at all. The title was interesting and from it, I expected more.
This part REALLY bugged me:
"Their expectation is not to be the captain of the football team or to run a mile with their peers," Reuben said. "Their expectation may be to do a half-mile at any sort of pace and if they achieve that they have done something fantastic."</end quote></div>
Jane, I agree with you...that part bugged me too. Although, I can't really say that the parents are being totally paranoid. Although I don't go to the extreme like they do...it's extremely tough being a parent and not knowing if you are doing the right thing or not. There's such a fine line. The article wasn't too bad.
Scarlett81
New member
Yeah,
I don't agree with it either, personally. I'm not a parent yet, so who knows-maybe I'd be that overprotective too?-Though I hope not.
There's a fine line between spreading awareness about the seriousness of this illness to promote finding a cure-and just making it sound like you have to live in a bubble.
I don't know-I've made it to 24, with cepacia, and I have years still here to go-My mom let me play on our farm, jump in the mud, swim in the pond, catch frogs, camp out, and all that stuff. I was in school plays, went snowboarding with all my friends...I wasn't the captain of anything b/c I wasn't interested in that but I can tell you if I wanted to be my mom would have encouraged it.
All in all, I had a pretty normal childhood as far as play and activity goes. I was never told I couldn't do something b/c of my illness.
I thank GOD for that!!!
I don't agree with it either, personally. I'm not a parent yet, so who knows-maybe I'd be that overprotective too?-Though I hope not.
There's a fine line between spreading awareness about the seriousness of this illness to promote finding a cure-and just making it sound like you have to live in a bubble.
I don't know-I've made it to 24, with cepacia, and I have years still here to go-My mom let me play on our farm, jump in the mud, swim in the pond, catch frogs, camp out, and all that stuff. I was in school plays, went snowboarding with all my friends...I wasn't the captain of anything b/c I wasn't interested in that but I can tell you if I wanted to be my mom would have encouraged it.
All in all, I had a pretty normal childhood as far as play and activity goes. I was never told I couldn't do something b/c of my illness.
I thank GOD for that!!!
WTF -- getting to ages 5, 6, or 7 as normal as possible?!!? There are large numbers who are making it through high school or college as "normal as possible" -- considering that they seem to be defining normal as including preventative treatments.
Blah! I feel like they should have to write another article or make corrections or something.
Blah! I feel like they should have to write another article or make corrections or something.
Articles like this bug me -- last year during great strides there was an article in our area about a newly diagnosed patient -- made him sound like bubble boy -- can't go outside, can't go to school, mom has to quit her job to take care of the children -- older child w/out cf had to be taken out and homeschooled as per a doctor's advice because he might bring home germs to the newly diagnosed child.
All I can think is that the parents are repeating what they're being told by their doctor. Some people are like that -- take their doctor's advice, comments as the gospel and don't question things. L
All I can think is that the parents are repeating what they're being told by their doctor. Some people are like that -- take their doctor's advice, comments as the gospel and don't question things. L
tonrsoul82
New member
bah this article from the get go is BS it says they want her
daughter to live a normal life.. well having this disease my whole
life and all my treatments and such... IT IS NORMAL for me.. In my
opinion they need to quit feeling sorry for themselves. That
is what it sounds like they are doing is feeling sorry for them
selves for being told they were going to have a normal baby, and
having one with CF.
daughter to live a normal life.. well having this disease my whole
life and all my treatments and such... IT IS NORMAL for me.. In my
opinion they need to quit feeling sorry for themselves. That
is what it sounds like they are doing is feeling sorry for them
selves for being told they were going to have a normal baby, and
having one with CF.
Emeraldmirror
New member
I agree.. what an awful article.. I never did, or didn't do anythin gbefore of my cf. Germs in small doses (kinda like an immunization).. is good for you.. it builds the immune system. That child is either going to a: become a complete leach on society.. unable to do anything for themselves and depending on their parents until they die and then.. who knows then. or b: go out and be like some sheltered kids.. a complete maniac and then end up dying from the first cold they ever get.. or dying from generally live life in excess. Be assertive towards cf. Tell your child they have cf but don't make it seem like it's something no one understands or.. you know do anything to alienate your child from everyone else. I dunno.. I think my parents did a pretty good job in making me aware of my cf.. but not letting it run my life to the extreme.
Oh yeah.. and as far as abig groups go.. i went to public school with lots of kids.. went to day care.. went to cf camp... (those parents would just die if they even thought of bringing their kid to cf camp)... had a pool... went swimming in public pools.. went swimming in lake erie.. even the more dirty parts of lake erie, played in the rain, caught snails, ate crickets (when i was a baby), played on mud, played in tar, played in the barns with horses and so on and so on... and as far as i'm concerned.. i'm normal gosh darn it.
Ashley 22 w/cf
Oh yeah.. and as far as abig groups go.. i went to public school with lots of kids.. went to day care.. went to cf camp... (those parents would just die if they even thought of bringing their kid to cf camp)... had a pool... went swimming in public pools.. went swimming in lake erie.. even the more dirty parts of lake erie, played in the rain, caught snails, ate crickets (when i was a baby), played on mud, played in tar, played in the barns with horses and so on and so on... and as far as i'm concerned.. i'm normal gosh darn it.
Ashley 22 w/cf
Emily65Roses
New member
This really does kinda suck, I must say. The part Jane copied bugged me sideways too, and let me tell you why:
I can't run worth a damn, but I will have you all know THAT IN 8TH GRADE, I FINISHED THE MILE WITH MY PEERS, IN UNDER 9 MINUTES.
Okay, Dr.-I-Know-Everything-and-I'm-a-Paranoid-Freak???
Ick, now see, anyone who reads that, and doesn't read much else about CF, is going to think that that's what we're all like. It's terrible PR and I'd rather have none, honestly. Blech.
Oh and I might add... any CF doc who suggests that mom quit her job, bring BOTH kids home (not even just the CFer, but the older one too???? jesus) so they can avoid germs (Ahhhhh!! it's Godzilla Germ, RUNNN!!!!) is a f*cking quack.
I can't run worth a damn, but I will have you all know THAT IN 8TH GRADE, I FINISHED THE MILE WITH MY PEERS, IN UNDER 9 MINUTES.
Okay, Dr.-I-Know-Everything-and-I'm-a-Paranoid-Freak???
Ick, now see, anyone who reads that, and doesn't read much else about CF, is going to think that that's what we're all like. It's terrible PR and I'd rather have none, honestly. Blech.
Oh and I might add... any CF doc who suggests that mom quit her job, bring BOTH kids home (not even just the CFer, but the older one too???? jesus) so they can avoid germs (Ahhhhh!! it's Godzilla Germ, RUNNN!!!!) is a f*cking quack.
norcotrent
New member
If you're inclined, please write the editor.
letters@readingeagle.com
letters@readingeagle.com
To me the article seemed naive and full of media-hype. Although they referenced the higher life expectancy, they seemed to keep the focus on low ages which is old style media. More dramatic I guess when they mention ages 5,6 and 7 instead of 31, 32, 33, etc.
All in all, lame. I'd get my information from somehwere else that's for sure. Whatever.
All in all, lame. I'd get my information from somehwere else that's for sure. Whatever.
Now, Ry was terribly abnormal, but for reasons unrelated to CF lol.
He did school plays, was in Spanish club, had a bar mitzvah, partied, went to the state tap competition, was voted Mr. individuality, nominated for ice prince, played pickup soccer, graduated, went to college, got married, had a kid.....yes, all sounds like he really had to adjust his dreams to tiny, tiny things.
I also have to comment on all the Godzilla germ stuff, like Emily said. <div class="FTQUOTE"><begin quote> No mixing with large groups. No family trips to lakes or rivers. No backyard pools</end quote></div>
I see more and more CF parents actually DOING this stuff. Their kids, I feel sorry for, what a childhood to remember. Ry swam in the river, caught frogs, had sleepovers, both at his and other people's houses, went to parties and temple, swam in the pool, went fishing, went to school....he actually had FUN. He had amazing memories of being a normal kid. I hate how insane people are getting, this generation of CF kids is in more danger of being bubble boys/girls than ever, and that's a huge pet peeve of mine. I'm done, haha.
He did school plays, was in Spanish club, had a bar mitzvah, partied, went to the state tap competition, was voted Mr. individuality, nominated for ice prince, played pickup soccer, graduated, went to college, got married, had a kid.....yes, all sounds like he really had to adjust his dreams to tiny, tiny things.
I also have to comment on all the Godzilla germ stuff, like Emily said. <div class="FTQUOTE"><begin quote> No mixing with large groups. No family trips to lakes or rivers. No backyard pools</end quote></div>
I see more and more CF parents actually DOING this stuff. Their kids, I feel sorry for, what a childhood to remember. Ry swam in the river, caught frogs, had sleepovers, both at his and other people's houses, went to parties and temple, swam in the pool, went fishing, went to school....he actually had FUN. He had amazing memories of being a normal kid. I hate how insane people are getting, this generation of CF kids is in more danger of being bubble boys/girls than ever, and that's a huge pet peeve of mine. I'm done, haha.
Emily65Roses
New member
I just emailed them. Thanks to Narcotrent for posting the email address.
<i>I wish to comment on this article. I have to say, you were poorly informed, and chose a less-than-model family to do the article on. I myself have CF and I'm big in the CF community. I talk to a lot of CFers, offer advice when I can, etc. And I think you should know that that article appalled most of the ones I know that read it.
The one sentence you wrote that I really thought was on target was: "They no longer die routinely in their early teens. Now they make it into their 20s and even 30s." That's very true and very correct. But it's just about the only thing that didn't offend everyone I know that read it.
The comment about not being a football team captain or running the mile with our peers was garbage. I am not a particularly healthy CFer. I am on three nebulized meds, I go on IVs once or twice a year, I expect to die probably in my 30s (I know of some CFers who are ridiculously healthy and live to see 50s, 60s, though they're rare). And I think you should know that I ran the mile with my peers in 8th grade, finished in under 9 minutes. There's a guy on the website I visit that was captain of his hockey team for years.
I'm pleased that you didn't treat CF like it's no big deal (some people do that and it drives us nuts, because it still kills). But you went overboard. The doctor for that family, I might add, sounds like a damn quack. Keeping kids out of public school to avoid germs is insane and uncalled for. Many docs would tell you so. It's actually good for kids to be among groups so that their immune systems can build up immunities to common colds and what have you.
This sentence disgusted me: "No mixing with large groups. No family trips to lakes or rivers. No backyard pools." I went swimming in many various pools, backyard pools, country club pools, water parks on vacation... I take a family trip to Lake George in NY every year, and yes, I swim in the lake. No mixing with large groups is garbage as well. Some people DO take this approach with their CF children, and I feel terrible for those kids. I grew up like a normal kid. I went swimming, I went on sleepovers. I played with frogs and dug up worms to go fishing. I am 22 years old and still have 70% of my lung function. That's pretty damn good, if I do say so myself. I think showing this kind of CF family example is terrible. It gives some CF families the idea that this is the way to go, and I (as well as many others) think that that's rubbish.
CF doesn't get a whole lot of media footage, but I have to tell you... If my choices are NO coverage or this kind of coverage, I'd rather have none. This article sends the wrong idea to people who have no idea what CF is, and to CF families who are still learning how to deal with CF. Yes, you have to adjust around it. What you don't have to do is put your child in a goddamn bubble. What good is a life that's maybe a few years longer, but lived locked away in a closet? Versus a life that's maybe a few years shorter, but full, and lived like any other child, playing, having friends? Maybe some parents prefer the hermetically sealed lifestyle, but those kids are the ones that grow up to resent their parents. My parents, CF or not, allowed me to be a kid, and I will always be grateful to them for it. Our lives are already shorter, why also make them less worth living, by taking away all the things kids enjoy?
I just believe it's important that you know that many CFers, including myself, think this is a TERRIBLE example of CF to show the world. You could've chosen a much more well-rounded family.
- Emily Lastname, of CT, 22 year old with CF.</i>
<i>I wish to comment on this article. I have to say, you were poorly informed, and chose a less-than-model family to do the article on. I myself have CF and I'm big in the CF community. I talk to a lot of CFers, offer advice when I can, etc. And I think you should know that that article appalled most of the ones I know that read it.
The one sentence you wrote that I really thought was on target was: "They no longer die routinely in their early teens. Now they make it into their 20s and even 30s." That's very true and very correct. But it's just about the only thing that didn't offend everyone I know that read it.
The comment about not being a football team captain or running the mile with our peers was garbage. I am not a particularly healthy CFer. I am on three nebulized meds, I go on IVs once or twice a year, I expect to die probably in my 30s (I know of some CFers who are ridiculously healthy and live to see 50s, 60s, though they're rare). And I think you should know that I ran the mile with my peers in 8th grade, finished in under 9 minutes. There's a guy on the website I visit that was captain of his hockey team for years.
I'm pleased that you didn't treat CF like it's no big deal (some people do that and it drives us nuts, because it still kills). But you went overboard. The doctor for that family, I might add, sounds like a damn quack. Keeping kids out of public school to avoid germs is insane and uncalled for. Many docs would tell you so. It's actually good for kids to be among groups so that their immune systems can build up immunities to common colds and what have you.
This sentence disgusted me: "No mixing with large groups. No family trips to lakes or rivers. No backyard pools." I went swimming in many various pools, backyard pools, country club pools, water parks on vacation... I take a family trip to Lake George in NY every year, and yes, I swim in the lake. No mixing with large groups is garbage as well. Some people DO take this approach with their CF children, and I feel terrible for those kids. I grew up like a normal kid. I went swimming, I went on sleepovers. I played with frogs and dug up worms to go fishing. I am 22 years old and still have 70% of my lung function. That's pretty damn good, if I do say so myself. I think showing this kind of CF family example is terrible. It gives some CF families the idea that this is the way to go, and I (as well as many others) think that that's rubbish.
CF doesn't get a whole lot of media footage, but I have to tell you... If my choices are NO coverage or this kind of coverage, I'd rather have none. This article sends the wrong idea to people who have no idea what CF is, and to CF families who are still learning how to deal with CF. Yes, you have to adjust around it. What you don't have to do is put your child in a goddamn bubble. What good is a life that's maybe a few years longer, but lived locked away in a closet? Versus a life that's maybe a few years shorter, but full, and lived like any other child, playing, having friends? Maybe some parents prefer the hermetically sealed lifestyle, but those kids are the ones that grow up to resent their parents. My parents, CF or not, allowed me to be a kid, and I will always be grateful to them for it. Our lives are already shorter, why also make them less worth living, by taking away all the things kids enjoy?
I just believe it's important that you know that many CFers, including myself, think this is a TERRIBLE example of CF to show the world. You could've chosen a much more well-rounded family.
- Emily Lastname, of CT, 22 year old with CF.</i>
This article totally pissed me off today. The last time I checked, many of us are more active than our "normal" average counterparts. There is a woman with CF who partipates in the ironman competitions. Another guy in England who is running marathons. A man in Chicago who had a double lung transplant, is well into his 40's, I believe, and hustled up 94 flights of the John Hancock building. Many of us are into our careers, have families, participate in sports. If this isn't normal then no one is normal.
The doctor sounds like a huge a-hole and/or the reporter is being irresponsible in reporting the information in order to create hype - I agree with Newfy in regards to apparent media hype to sell a story. Thanks for the email annon, I may just send them a comment.
Point -
The doctor sounds like a huge a-hole and/or the reporter is being irresponsible in reporting the information in order to create hype - I agree with Newfy in regards to apparent media hype to sell a story. Thanks for the email annon, I may just send them a comment.
Point -