This is a post I made to the Cystic-L mailing list, which I feel expands on my views (about how CF sucks, yadda yadda), in a way that I hope is detailed enough to sound eminently reasonable, isn't contradicting anyone specifically (who might feel they're being attacked, and not just challenged on a viewpoint), and--I hope--doesn't immediately drive some people batty, like past comments. It was about life expectancies, not complications themselves, but I feel it makes my point well. Just because some people--myself included--avoid (... up to a time, at least) many of the terrors CF dumps in our lap, doesn't mean it's no big deal.
====================
You've assuredly heard the saying that there are "Lies, Damned Lies, and Statistics." I think this applies very well in the case of CF (and other childhood-onwards illnesses), specifically. Let's take 10 hypothetical patients. 7 of them die around 11 years of age; one lives to 75, one lives to 64, and one lives to 48. The "mean" of their ages is 26! A few high numbers skew the statistic, and hide the fact that only 30% will reach more than 12 years of age.
I think it's much less misleading--and sobering--to glean the percentage of patients alive at specific ages, instead. While this will differ based on treatment available--hence, more patients born in 1980 are still alive at 20 than patients born in 1960--I think it will give you a more accurate picture. So, how many patients born in 1980 are still alive, 25 years later? 70%? 60%? Half of them? A third of them? I've seen so many friends die of this miserable, hell-spawned disease... but I haven't studied them from birth. Many of my generation would have died before I met them (which would mean I'd underestimate the number of dead). And, it's possible that those less ill would not post that often to groups like this, or visit clinic that often, or in general make friends based on the shared fact of CF itself (which would make me overestimate the number of casualties, just going by number of dead friends).
Realistically, how many people with CF have few enough symptoms that they can avoid being detected to adulthood? 2-5%? (Has anyone sampled the general population of 20-year olds, for instance, with genetic testing, to find the true number of asymptomatic patients?) I can't imagine the number is that high, but welcome research into the matter. And would the number of miscarried CF fetuses differ from that of miscarried anything-fetuses? (Does it cause *any* known complications in the womb?)
On a philosophical note, should someone so asymptomatic that they can go safely go without medication for years, even be called a "CF patient"? If they should, with the description being technically accurate, should that matter when discussing "CF" (the disease which does kill people, and unites people who've been through it) life expectancies? By the same token, it's technically accurate to say a man who had his leg bitten off by a crocodile, and a man who bruised one, both sustained an "injury." But how reasonable is it, to average their life expectancies (which can vary from 10 seconds, to "as long as that of someone in the general population") and determine that "we've made great strides in treating them, so leg injuries aren't that serious anymore"?
Whatever the number of deaths is, it's that number too many. That, I can say for sure. And at any rate, I'd wager good money it's no serious consolation, to a parent mourning their child, or a wife mourning her husband, that theirs had only a comparatively small chance of dying... the sad fact of the matter is, they do. And no statistic, no matter how optimistic, can obfuscate the tragedy. We should never, ever lose sight of the fact, just because a good part of those afflicted with CF can afford to make long-term plans, nowadays.
Hugs (with appropriate cross-contanimation safeguards and hospital-grade gowns, of course) to everyone. (Especially James Binegar, of <a target=new class=ftalternatingbarlinklarge href="http://www.ajcf.com/">Ask James About CF</a>, a friend who just got his lung transplant--after painstaking months of waiting--a few days ago.)
====================
You've assuredly heard the saying that there are "Lies, Damned Lies, and Statistics." I think this applies very well in the case of CF (and other childhood-onwards illnesses), specifically. Let's take 10 hypothetical patients. 7 of them die around 11 years of age; one lives to 75, one lives to 64, and one lives to 48. The "mean" of their ages is 26! A few high numbers skew the statistic, and hide the fact that only 30% will reach more than 12 years of age.
I think it's much less misleading--and sobering--to glean the percentage of patients alive at specific ages, instead. While this will differ based on treatment available--hence, more patients born in 1980 are still alive at 20 than patients born in 1960--I think it will give you a more accurate picture. So, how many patients born in 1980 are still alive, 25 years later? 70%? 60%? Half of them? A third of them? I've seen so many friends die of this miserable, hell-spawned disease... but I haven't studied them from birth. Many of my generation would have died before I met them (which would mean I'd underestimate the number of dead). And, it's possible that those less ill would not post that often to groups like this, or visit clinic that often, or in general make friends based on the shared fact of CF itself (which would make me overestimate the number of casualties, just going by number of dead friends).
Realistically, how many people with CF have few enough symptoms that they can avoid being detected to adulthood? 2-5%? (Has anyone sampled the general population of 20-year olds, for instance, with genetic testing, to find the true number of asymptomatic patients?) I can't imagine the number is that high, but welcome research into the matter. And would the number of miscarried CF fetuses differ from that of miscarried anything-fetuses? (Does it cause *any* known complications in the womb?)
On a philosophical note, should someone so asymptomatic that they can go safely go without medication for years, even be called a "CF patient"? If they should, with the description being technically accurate, should that matter when discussing "CF" (the disease which does kill people, and unites people who've been through it) life expectancies? By the same token, it's technically accurate to say a man who had his leg bitten off by a crocodile, and a man who bruised one, both sustained an "injury." But how reasonable is it, to average their life expectancies (which can vary from 10 seconds, to "as long as that of someone in the general population") and determine that "we've made great strides in treating them, so leg injuries aren't that serious anymore"?
Whatever the number of deaths is, it's that number too many. That, I can say for sure. And at any rate, I'd wager good money it's no serious consolation, to a parent mourning their child, or a wife mourning her husband, that theirs had only a comparatively small chance of dying... the sad fact of the matter is, they do. And no statistic, no matter how optimistic, can obfuscate the tragedy. We should never, ever lose sight of the fact, just because a good part of those afflicted with CF can afford to make long-term plans, nowadays.
Hugs (with appropriate cross-contanimation safeguards and hospital-grade gowns, of course) to everyone. (Especially James Binegar, of <a target=new class=ftalternatingbarlinklarge href="http://www.ajcf.com/">Ask James About CF</a>, a friend who just got his lung transplant--after painstaking months of waiting--a few days ago.)