Cystic Fibrosis Forum (EXP)

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  1. W

    cure b4 2020

    15 years? I really, really doubt. As advanced as medicine is becoming, CF itself isn't homogenous enough that a "cure" for it could be easily available. I can see some aspects of the disease being effectively "cured" by then (or soon after). Improved genetic screening could help ensure healthy...
  2. W

    Why hasn't the number changed?

    That members of other ethnicities don't need to worry about screening is particularly ignorant, not just because of interracial relationships, but because <i>they have common genetic ailments of their own</i> which caucasians get less often. Tay Sachs, Sickle Cell anemia, and so many others that...
  3. W

    to test or not to test?

    HELL YES, test the kid as soon as possible. It doesn't even involve any bloodletting. Minor discomfort, sure, but the damage that could be done to the kid's lungs if he <i>does</i> have it will always haunt you, if you don't rule out CF right now. Salty kids were believed to be the result of a...
  4. W

    Can someone give me some reasons

    You can repeat it 5, 10 or a hundred times, but that won't change that the perspective you speak of isn't "derived" from CF in any meaningful way. Plenty of those without CF (or any chronic illness) have it, and from my experience, only a minority of CF patients have it, too. At most, you hear...
  5. W

    Can someone give me some reasons

    <blockquote>Quote <hr>I say, if the person didn't have CF in the first place, he wouldn't have had anything to make his spirit that strong in the first place. =-) That's the point I'm getting at.<hr></blockquote> What evidence do you have that this is the case? Plenty of people who haven't...
  6. W

    Does anyone here write?

    I'm flattered. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Unfortunately, I've significantly toned down my rants since trying to get on UNC's transplant list. Ever more recently, I learned that even the most innocuous comment could be blown way, way to the stratosphere (i.e...
  7. W

    Can someone give me some reasons

    <blockquote>Quote <hr><i>Originally posted by: <b>Anonymous</b></i> you ever seen that one skit they do on saturday night live called "debbie downer"? you remind me of her. <hr></blockquote> How so? Acknowledging all the trials we face isn't being unnecessarily pessimistic; it's being...
  8. W

    Can someone give me some reasons

    Haha, no kidding. Plus, rock stars don't particularly suffer from debilitating surgeries, toxic side effects of medical treatment, inability to eat without having to poke yourself in the stomache first, tedious treatments that take 1/3 of your waking hours, chronic exhaustion, being tethered to...
  9. W

    Can someone give me some reasons

    Unfortunately, CF can not only kill you, it can <i>take away your life</i>. As far as I'm concerned, there's a world of difference.
  10. W

    Does anyone here write?

    I wrote a short story, once. It'd get me banned at most child-friendly websites, though. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Other than that, I write extensively on non-fictional subjects (politics, religion, etc.) and am working on several books. None of them will...
  11. W

    pulmicort

    Prednisone is POISONOUS EVIL CRAP. It gave me diabetes and <i>severe</i> osteoporosis (I favor the medical school of thought which only advises oral corticosteroids--with extreme reservations, at the lowest possible doses, for the shortest possible periods--when the alternative is even worse...
  12. W

    Can someone give me some reasons

    <blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I was wondering if someone could give me some reasons to think that life is worth living?<hr></blockquote> Dunno if it'll help you, but for what it's worth, this is one of my favorite poems (and always lifts my mood...
  13. W

    IS THERE ANYONE ELSE?!?!?!?!?!?!?

    Until recently, I never needed oxygen. My PFTs were down to 17% in March (!!) and I still only needed it while asleep. More recently, I'm feeling the lack of breathing more and more obviously, so it's very annoying being tethered to that device on occasion. <img...
  14. W

    life span for "mild case"

    Hal Soloff turned 74 on April 9th. I'm not sure how "mild" his case was, though; it may have been just the best chest-treatment regimen anyone's ever heard of, or an act of Flying Spaghetti Monster. <img src="i/expressions/face-icon-small-smile.gif" border="0">
  15. W

    cf deal breakers

    <blockquote>Quote<br><hr> Foley catheter<hr></blockquote> Congratulations, you just made me cringe. And when I've done extensive research (including looking for good pictures) of eye-infesting worms and the like, that says ALOT.
  16. W

    How many people are........

    What you argue doesn't change the underlying nature of the problem with Heaven, Mockingbird. If a perfect existence is possible without suffering, that begs the question of why God would make anyone go through the worldly charade, in the first place. And if a perfect existence is <i>not</i>...
  17. W

    How many people are........

    If adversity is necessary for a meaningful existence, though, that makes Heaven rather superfluous, wouldn't you agree? <img src="i/expressions/face-icon-small-smile.gif" border="0"> You really can't consistently believe that, on the one hand, bad things are bad (and won't exist in Heaven), and...
  18. W

    How many people are........

    Well, if it wasn't a coincidence, then it's certainly strange why tons of people in life-saving circumstances asked the gods for help, but were largely ignored... it seems that those who recover attribute it to something magical, while the greater number of people who didn't are forgotten...
  19. W

    To those with websites...

    As far as I know, you can *register a domain* with Yahoo! or Netfirms for $5 a year, with no further obligations to host it with them. I suggest going that route, at least. Other than that, I can't help you much, as I'm not exactly experienced with stores. Have you considered an eBay store if...
  20. W

    What do you think? ...for WinAce

    That blog makes a stronger accusation than it can justify, though. Citing a dubious "fact" isn't necessarily lying; sloppy, careless and not what a journalist should be known for, yes, but only intent to deceive would make it a lie. I don't think it made a case that O'Reilly knew, in that...
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