ok....im confused!!

[crickit715]

ok, so i understand that when they say on the cff.org website that 37yr of age is the MEDIAN age that it does not mean "average" age people live to with cf...but how can that be if this article states that today only 47% of people with cf live beyond the age of 18?????? (does this seem contradictory or am i reading it wrong?)





ABCNews.com: "Many with Cystic Fibrosis Living Longer"

June 25, 2010

When Kevin Przybyl of Orlando was born with cystic fibrosis 30 years ago, his doctors predicted he would not live past age 13. Today, he is married, raising a son and running a bass fishing guide business.

ABCNews.com features Przybyl in a story today about the growing number of people with CF living into adulthood and beyond, thanks to advancements in treatments and care.

Data gathered by the Cystic Fibrosis Foundation, the story says, shows that a decade ago, only 35 percent of people with CF reached at least age 18. Today, that number has grown to 47 percent.

Further, researchers are now developing therapies aimed at correcting the underlying cause of cystic fibrosis.

"If we can get therapies that treat the function and basic defect of the disease, that's a game changer," said Dr. Bruce Marshall, vice president of clinical affairs at the Cystic Fibrosis Foundation. "We'd see people are dying with CF rather than from CF."

 

[crickit715]

ok, so i understand that when they say on the cff.org website that 37yr of age is the MEDIAN age that it does not mean "average" age people live to with cf...but how can that be if this article states that today only 47% of people with cf live beyond the age of 18?????? (does this seem contradictory or am i reading it wrong?)





ABCNews.com: "Many with Cystic Fibrosis Living Longer"

June 25, 2010

When Kevin Przybyl of Orlando was born with cystic fibrosis 30 years ago, his doctors predicted he would not live past age 13. Today, he is married, raising a son and running a bass fishing guide business.

ABCNews.com features Przybyl in a story today about the growing number of people with CF living into adulthood and beyond, thanks to advancements in treatments and care.

Data gathered by the Cystic Fibrosis Foundation, the story says, shows that a decade ago, only 35 percent of people with CF reached at least age 18. Today, that number has grown to 47 percent.

Further, researchers are now developing therapies aimed at correcting the underlying cause of cystic fibrosis.

"If we can get therapies that treat the function and basic defect of the disease, that's a game changer," said Dr. Bruce Marshall, vice president of clinical affairs at the Cystic Fibrosis Foundation. "We'd see people are dying with CF rather than from CF."

 

[crickit715]

ok, so i understand that when they say on the cff.org website that 37yr of age is the MEDIAN age that it does not mean "average" age people live to with cf...but how can that be if this article states that today only 47% of people with cf live beyond the age of 18?????? (does this seem contradictory or am i reading it wrong?)
<br />
<br />
<br />
<br />
<br />
<br />ABCNews.com: "Many with Cystic Fibrosis Living Longer"
<br />
<br />June 25, 2010
<br />
<br />When Kevin Przybyl of Orlando was born with cystic fibrosis 30 years ago, his doctors predicted he would not live past age 13. Today, he is married, raising a son and running a bass fishing guide business.
<br />
<br />ABCNews.com features Przybyl in a story today about the growing number of people with CF living into adulthood and beyond, thanks to advancements in treatments and care.
<br />
<br />Data gathered by the Cystic Fibrosis Foundation, the story says, shows that a decade ago, only 35 percent of people with CF reached at least age 18. Today, that number has grown to 47 percent.
<br />
<br />Further, researchers are now developing therapies aimed at correcting the underlying cause of cystic fibrosis.
<br />
<br />"If we can get therapies that treat the function and basic defect of the disease, that's a game changer," said Dr. Bruce Marshall, vice president of clinical affairs at the Cystic Fibrosis Foundation. "We'd see people are dying with CF rather than from CF."

 

[Mommafirst]

I read this last week and had the same confused reaction. I can't really figure it out. I think it has to do with the fact that a median is a stupid way to report data and should never have been used in the first place. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Median is the middle number, but not the middle of the entire span -- but the middle as in 100 people were reported if we put them in age order, what would the 50th person's age be. It still doesn't quell with the 47% making it to 18+ though, because then you'd need 49 people of the 100 being over 37 in some way or another and that doesn't make sense in relation to the 18+ thing.

So I'm with you -- I don't get it.

 

[Mommafirst]

I read this last week and had the same confused reaction. I can't really figure it out. I think it has to do with the fact that a median is a stupid way to report data and should never have been used in the first place. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Median is the middle number, but not the middle of the entire span -- but the middle as in 100 people were reported if we put them in age order, what would the 50th person's age be. It still doesn't quell with the 47% making it to 18+ though, because then you'd need 49 people of the 100 being over 37 in some way or another and that doesn't make sense in relation to the 18+ thing.

So I'm with you -- I don't get it.

 

[Mommafirst]

I read this last week and had the same confused reaction. I can't really figure it out. I think it has to do with the fact that a median is a stupid way to report data and should never have been used in the first place. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Median is the middle number, but not the middle of the entire span -- but the middle as in 100 people were reported if we put them in age order, what would the 50th person's age be. It still doesn't quell with the 47% making it to 18+ though, because then you'd need 49 people of the 100 being over 37 in some way or another and that doesn't make sense in relation to the 18+ thing.
<br />
<br />So I'm with you -- I don't get it.

 

[mamaScarlett]

yes i read and thought the SAME thing!

 

[mamaScarlett]

yes i read and thought the SAME thing!

 

[mamaScarlett]

yes i read and thought the SAME thing!

 

[dbtoo]

Just because it's on the internet, doesn't mean it's true. Just because it's posted on a website that you want to believe is accurate, doesn't mean it's authoritative. Don't believe everything you are told, don't trust everything that you read.

Conspiracy theories aside, let's look at some ideas (I won't use the term 'facts', cause I don't have any.)

CFF exists to fund experimental work for diagnosing and treating the disease. CFF exists because the disease was usually diagnosed at very young ages, and at the time, conditions were such that the children died before adulthood. CFF uses that to their advantage to obtain contributions so that they can continue to fund the studies and produce medications (and, pay the salaries of those who work for CFF.) You don't see old cystics on poster boards saying ' your contributions helped get me to this point'... just won't work, people would stop contributing thinking, 'our work is done - people live longer now, why continue to donate, time to find a new cause.')

As stronger medications eradicated and reduced many of the childhood sicknesses which could hinder the health of young children with CF, the improvements of diagnostic testing resulting in adult diagnosis, and other elements of our emerging world yielding an 'older' group of Cystics. As the group of older cystics continues to increase, the numbers supporting the emphasis of 'childhood disease' would decrease... <i><b>counterproductive </b></i>to an organization which makes its funding based on the need to help children reach adulthood.

All this being said, (and it is strictly an opinion) I say, forget about the numbers! Let CFF print what ever they need to in order to continue to get the funding required.

If you have CF, or care for a child/adult with CF, what you need to consider is <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=32641&catid=1953">What if tomorrow comes? </a>

I've never listened to what the 'numbers' say... Or maybe it's like one younger Cyster said to me once, 'maybe your just too stupid to know when to die?'

Yeah! Now there is truth....

 

[dbtoo]

Just because it's on the internet, doesn't mean it's true. Just because it's posted on a website that you want to believe is accurate, doesn't mean it's authoritative. Don't believe everything you are told, don't trust everything that you read.

Conspiracy theories aside, let's look at some ideas (I won't use the term 'facts', cause I don't have any.)

CFF exists to fund experimental work for diagnosing and treating the disease. CFF exists because the disease was usually diagnosed at very young ages, and at the time, conditions were such that the children died before adulthood. CFF uses that to their advantage to obtain contributions so that they can continue to fund the studies and produce medications (and, pay the salaries of those who work for CFF.) You don't see old cystics on poster boards saying ' your contributions helped get me to this point'... just won't work, people would stop contributing thinking, 'our work is done - people live longer now, why continue to donate, time to find a new cause.')

As stronger medications eradicated and reduced many of the childhood sicknesses which could hinder the health of young children with CF, the improvements of diagnostic testing resulting in adult diagnosis, and other elements of our emerging world yielding an 'older' group of Cystics. As the group of older cystics continues to increase, the numbers supporting the emphasis of 'childhood disease' would decrease... <i><b>counterproductive </b></i>to an organization which makes its funding based on the need to help children reach adulthood.

All this being said, (and it is strictly an opinion) I say, forget about the numbers! Let CFF print what ever they need to in order to continue to get the funding required.

If you have CF, or care for a child/adult with CF, what you need to consider is <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=32641&catid=1953">What if tomorrow comes? </a>

I've never listened to what the 'numbers' say... Or maybe it's like one younger Cyster said to me once, 'maybe your just too stupid to know when to die?'

Yeah! Now there is truth....

 

[dbtoo]

Just because it's on the internet, doesn't mean it's true. Just because it's posted on a website that you want to believe is accurate, doesn't mean it's authoritative. Don't believe everything you are told, don't trust everything that you read.
<br />
<br />Conspiracy theories aside, let's look at some ideas (I won't use the term 'facts', cause I don't have any.)
<br />
<br />CFF exists to fund experimental work for diagnosing and treating the disease. CFF exists because the disease was usually diagnosed at very young ages, and at the time, conditions were such that the children died before adulthood. CFF uses that to their advantage to obtain contributions so that they can continue to fund the studies and produce medications (and, pay the salaries of those who work for CFF.) You don't see old cystics on poster boards saying ' your contributions helped get me to this point'... just won't work, people would stop contributing thinking, 'our work is done - people live longer now, why continue to donate, time to find a new cause.')
<br />
<br />As stronger medications eradicated and reduced many of the childhood sicknesses which could hinder the health of young children with CF, the improvements of diagnostic testing resulting in adult diagnosis, and other elements of our emerging world yielding an 'older' group of Cystics. As the group of older cystics continues to increase, the numbers supporting the emphasis of 'childhood disease' would decrease... <i><b>counterproductive </b></i>to an organization which makes its funding based on the need to help children reach adulthood.
<br />
<br />All this being said, (and it is strictly an opinion) I say, forget about the numbers! Let CFF print what ever they need to in order to continue to get the funding required.
<br />
<br />If you have CF, or care for a child/adult with CF, what you need to consider is <a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=32641&catid=1953">What if tomorrow comes? </a>
<br />
<br />I've never listened to what the 'numbers' say... Or maybe it's like one younger Cyster said to me once, 'maybe your just too stupid to know when to die?'
<br />
<br />Yeah! Now there is truth....

 

[Brad]

As I understand it " MEDIAN age " means half the people living with Cf
today are above the age of 37 and half is below that same age.

 

[Brad]

As I understand it " MEDIAN age " means half the people living with Cf
today are above the age of 37 and half is below that same age.

 

[Brad]

As I understand it " MEDIAN age " means half the people living with Cf
<br /> today are above the age of 37 and half is below that same age.

 

[crickit715]

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

As I understand it " MEDIAN age " means half the people living with Cf

today are above the age of 37 and half is below that same age.</end quote></div>

than that would indeed be contradictory to the article above from abc.....thats what i dont understand!? <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[crickit715]

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

As I understand it " MEDIAN age " means half the people living with Cf

today are above the age of 37 and half is below that same age.</end quote>

than that would indeed be contradictory to the article above from abc.....thats what i dont understand!? <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[crickit715]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Brad</b></i>
<br />
<br />As I understand it " MEDIAN age " means half the people living with Cf
<br />
<br /> today are above the age of 37 and half is below that same age.</end quote>
<br />
<br />than that would indeed be contradictory to the article above from abc.....thats what i dont understand!? <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[DjFunkyFife]

All right, this has bugged me too, and these numbers seem to contradict, but, i looked up median... tried to find as many definitions as possible, looked at cff.org and have come to this conclusion: cff.org uses the word 'median' in a misleading way...

Brad: you are right, that is what the median age should mean, but cff.org does not mean that.

here is the sentence you all refer to, from cff.org:

"In 2008, the median predicted age of survival rose to 37.4 years, up from 32 in 2000. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2008."

two clues in there give away that they are trying to confuse us:

'median predicted age of survival' (which itself is contradictory) and

'the age by which half of the current CF Patient Registry population would be expected to survive'

They explain what they mean in that paragraph, just after that first statement, but most of us focus on the first part, and understand it the way any normal human would. After that weird first sentence they say that they predict that HALF OF CF'ERS WILL REACH 37, but the TRUE meaning of the term "median age," as we would understand it would mean that half of the people are that age. That is not what they really mean when they use median... they associate median with half, i donno if it;s wrong or not, but it seems like it.

So if they believe that HALF will reach 37, then the 47% living above 18 years of age makes more sense, but they do not present their numbers in the correct way.

I used to think that they meant the AVERAGE CF'er lived to the age they specify in that number, but their context shows that they expect HALF of CF'ers to live that long. (granted, that number does rise through time with new technologies and treatments)

In a nutshell: the way 99.99 % of us humans would understand that phrase: "half of cf'ers are 37 or above" (which is obviously not true)

the meaning they are trying to convey: "half will REACH 37"

Has that helped anyone?

i tried to make sense of this in a different topic too, but hadnt read what cff.org said, now that i've read it, the two numbers do make more sense, i understand what they are trying to say, they just shouldn't use the word median, because, if it applies, and there is some different meaning that none of us are aware of, it's still confusing as hell.

One other thing, i dont understand the point of that "half of cf'ers will reach this age" nonsense... how does that matter?... is that supposed to make us feel better? if HALF are supposed to reach 37, then why dont they just tell us what the REAL AVERAGE is... even if it is somewhere down around 20... that's not going to magically make us live a shorter amount of time.

 

[DjFunkyFife]

All right, this has bugged me too, and these numbers seem to contradict, but, i looked up median... tried to find as many definitions as possible, looked at cff.org and have come to this conclusion: cff.org uses the word 'median' in a misleading way...

Brad: you are right, that is what the median age should mean, but cff.org does not mean that.

here is the sentence you all refer to, from cff.org:

"In 2008, the median predicted age of survival rose to 37.4 years, up from 32 in 2000. The median predicted age of survival is the age by which half of the current CF Patient Registry population would be expected to survive, given the ages of the patients in the registry and the distribution of deaths in 2008."

two clues in there give away that they are trying to confuse us:

'median predicted age of survival' (which itself is contradictory) and

'the age by which half of the current CF Patient Registry population would be expected to survive'

They explain what they mean in that paragraph, just after that first statement, but most of us focus on the first part, and understand it the way any normal human would. After that weird first sentence they say that they predict that HALF OF CF'ERS WILL REACH 37, but the TRUE meaning of the term "median age," as we would understand it would mean that half of the people are that age. That is not what they really mean when they use median... they associate median with half, i donno if it;s wrong or not, but it seems like it.

So if they believe that HALF will reach 37, then the 47% living above 18 years of age makes more sense, but they do not present their numbers in the correct way.

I used to think that they meant the AVERAGE CF'er lived to the age they specify in that number, but their context shows that they expect HALF of CF'ers to live that long. (granted, that number does rise through time with new technologies and treatments)

In a nutshell: the way 99.99 % of us humans would understand that phrase: "half of cf'ers are 37 or above" (which is obviously not true)

the meaning they are trying to convey: "half will REACH 37"

Has that helped anyone?

i tried to make sense of this in a different topic too, but hadnt read what cff.org said, now that i've read it, the two numbers do make more sense, i understand what they are trying to say, they just shouldn't use the word median, because, if it applies, and there is some different meaning that none of us are aware of, it's still confusing as hell.

One other thing, i dont understand the point of that "half of cf'ers will reach this age" nonsense... how does that matter?... is that supposed to make us feel better? if HALF are supposed to reach 37, then why dont they just tell us what the REAL AVERAGE is... even if it is somewhere down around 20... that's not going to magically make us live a shorter amount of time.