ok....im confused!!

[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...
<br />
<br />Brad: you are right, that is what the median age should mean, but cff.org does not mean that.
<br />
<br />here is the sentence you all refer to, from cff.org:
<br />
<br />"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."
<br />
<br />two clues in there give away that they are trying to confuse us:
<br />
<br />'median predicted age of survival' (which itself is contradictory) and
<br />
<br />'the age by which half of the current CF Patient Registry population would be expected to survive'
<br />
<br />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.
<br />
<br />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.
<br />
<br />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)
<br />
<br />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)
<br />
<br />the meaning they are trying to convey: "half will REACH 37"
<br />
<br />Has that helped anyone?
<br />
<br />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.
<br />
<br />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.

 

[static]

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

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....</end quote></div>

Pretty much what he said. Even accurate statistics can be altered to look a certain way by gathering the data using different methods. For example, a person who averages the lifespan of CF using a sample of 100 individuals will get a different statistic than a person who organized those 100 individuals into different age groups, even though both are statistically acurate with their selected methods.

 

[static]

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

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....</end quote>

Pretty much what he said. Even accurate statistics can be altered to look a certain way by gathering the data using different methods. For example, a person who averages the lifespan of CF using a sample of 100 individuals will get a different statistic than a person who organized those 100 individuals into different age groups, even though both are statistically acurate with their selected methods.

 

[static]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dbtoo</b></i>
<br />
<br />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 />
<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 />
<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 />
<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 />
<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 />
<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 />
<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 />
<br />
<br />Yeah! Now there is truth....</end quote>
<br />
<br />Pretty much what he said. Even accurate statistics can be altered to look a certain way by gathering the data using different methods. For example, a person who averages the lifespan of CF using a sample of 100 individuals will get a different statistic than a person who organized those 100 individuals into different age groups, even though both are statistically acurate with their selected methods.

 

[ymikhale]

The keyword is PREDICTED. which means that they use a model that takes as input the CF registry data and death data and makes an estimation of median age.

So basically it is an estimated number. If their model is good, then the actual number should be close, but they don't provide that information.

 

[ymikhale]

The keyword is PREDICTED. which means that they use a model that takes as input the CF registry data and death data and makes an estimation of median age.

So basically it is an estimated number. If their model is good, then the actual number should be close, but they don't provide that information.

 

[ymikhale]

The keyword is PREDICTED. which means that they use a model that takes as input the CF registry data and death data and makes an estimation of median age.
<br />
<br />So basically it is an estimated number. If their model is good, then the actual number should be close, but they don't provide that information.

 

[crickit715]

djfunkyfife-----thanks, thats the best way ive heard it explained yet!! it seems nonsense and intentionally misleading that they even put that "37 median" on their web page then! in my opinion it does more harm than good, especially for those cf'ers and families who chose not to dig deeper into info about cf. example: after the episode of "americas got talent" where the one young girl exclaimed to the world that the "average" age people with cf live to now is 37.....(info that was most likely received on cff.org) i started getting comments from individuals (friends/family) basically saying "see cf isnt so bad after all!"...this kind of misleading information drives me wild!!!

 

[crickit715]

djfunkyfife-----thanks, thats the best way ive heard it explained yet!! it seems nonsense and intentionally misleading that they even put that "37 median" on their web page then! in my opinion it does more harm than good, especially for those cf'ers and families who chose not to dig deeper into info about cf. example: after the episode of "americas got talent" where the one young girl exclaimed to the world that the "average" age people with cf live to now is 37.....(info that was most likely received on cff.org) i started getting comments from individuals (friends/family) basically saying "see cf isnt so bad after all!"...this kind of misleading information drives me wild!!!

 

[crickit715]

djfunkyfife-----thanks, thats the best way ive heard it explained yet!! it seems nonsense and intentionally misleading that they even put that "37 median" on their web page then! in my opinion it does more harm than good, especially for those cf'ers and families who chose not to dig deeper into info about cf. example: after the episode of "americas got talent" where the one young girl exclaimed to the world that the "average" age people with cf live to now is 37.....(info that was most likely received on cff.org) i started getting comments from individuals (friends/family) basically saying "see cf isnt so bad after all!"...this kind of misleading information drives me wild!!!

 

[dbtoo]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>crickit715</b></i>

example: after the episode of "americas got talent" where the one young girl exclaimed to the world that the "average" age people with cf live to now is 37.....(info that was most likely received on cff.org) i started getting comments from individuals (friends/family) basically saying "see cf isnt so bad after all!"...this kind of misleading information drives me wild!!!</end quote></div>

That's what I was saying! If CFF were to indicate the actual numbers of those who are 'aging' who have CF, they wouldn't be getting donations to the extent needed to continue to try to find a cure. At the same time, the parents of young children with CF want to know how long they can expect their child to survive. Having lived through the 'median' and beyond, several times, take heart! Your child has a greater opportunity to live a better and longer life than Brad and I were told to expect!

 

[dbtoo]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>crickit715</b></i>

example: after the episode of "americas got talent" where the one young girl exclaimed to the world that the "average" age people with cf live to now is 37.....(info that was most likely received on cff.org) i started getting comments from individuals (friends/family) basically saying "see cf isnt so bad after all!"...this kind of misleading information drives me wild!!!</end quote>

That's what I was saying! If CFF were to indicate the actual numbers of those who are 'aging' who have CF, they wouldn't be getting donations to the extent needed to continue to try to find a cure. At the same time, the parents of young children with CF want to know how long they can expect their child to survive. Having lived through the 'median' and beyond, several times, take heart! Your child has a greater opportunity to live a better and longer life than Brad and I were told to expect!

 

[dbtoo]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>crickit715</b></i>
<br />
<br /> example: after the episode of "americas got talent" where the one young girl exclaimed to the world that the "average" age people with cf live to now is 37.....(info that was most likely received on cff.org) i started getting comments from individuals (friends/family) basically saying "see cf isnt so bad after all!"...this kind of misleading information drives me wild!!!</end quote>
<br />
<br />That's what I was saying! If CFF were to indicate the actual numbers of those who are 'aging' who have CF, they wouldn't be getting donations to the extent needed to continue to try to find a cure. At the same time, the parents of young children with CF want to know how long they can expect their child to survive. Having lived through the 'median' and beyond, several times, take heart! Your child has a greater opportunity to live a better and longer life than Brad and I were told to expect!

 

[mamerth]

Quoted: Having lived through the 'median' and beyond, several times, take heart! Your child has a greater opportunity to live a better and longer life than Brad and I were told to expect! -- dbtoo.

I second that. This week I reach that "magical" age of 37 this week. Treatments and care when I was diagnosed was pretty basic-- percussion, oral antibiotics and enzymes. Now treatments are better-- more drugs (oral and inhaled) and lung therapy (flutter, vest). I was told would make it through my 20's-- after that it was unknown.

 

[mamerth]

Quoted: Having lived through the 'median' and beyond, several times, take heart! Your child has a greater opportunity to live a better and longer life than Brad and I were told to expect! -- dbtoo.

I second that. This week I reach that "magical" age of 37 this week. Treatments and care when I was diagnosed was pretty basic-- percussion, oral antibiotics and enzymes. Now treatments are better-- more drugs (oral and inhaled) and lung therapy (flutter, vest). I was told would make it through my 20's-- after that it was unknown.

 

[mamerth]

Quoted: Having lived through the 'median' and beyond, several times, take heart! Your child has a greater opportunity to live a better and longer life than Brad and I were told to expect! -- dbtoo.
<br />
<br />I second that. This week I reach that "magical" age of 37 this week. Treatments and care when I was diagnosed was pretty basic-- percussion, oral antibiotics and enzymes. Now treatments are better-- more drugs (oral and inhaled) and lung therapy (flutter, vest). I was told would make it through my 20's-- after that it was unknown.

 

[hmw]

Here's the thing.

This issue really isn't about the mindset parents need to have about their kids future (we parents can get great inspiration from you adults who have cf, no doubt about that, no matter what the cff tells us. it's one of the best things about this website imo.)

It also isn't really about the basic fact of whether or not things are better now than they used to be... I doubt any of us would argue that they are indeed better than they were in the past, by a long shot, and continue to get better due to improved therapies and better understanding of ways to improve health, avoid cross-contamination and so on.

What it IS about is the accuracy of the information being dispensed by the cff. I understand what those of you who are saying when you say don't get caught up in numbers. But here is the thing- those that don't know much about cf will hear numbers, and it's important that they hear the RIGHT ones. If the cff is going to give numbers, I don't want it to be 'projected' numbers. I want it to be numbers based on the reality we live in now, in 2010, because this is the world we live in now and the limitations we have to deal with when it comes to treatment etc. And because people who hear statistics are going to assume it means NOW, not what cff thinks will be the future of cf.

Oh, and while it is unfortunately true that a sick child will pull at more heartstrings in raising money, the number that cff commonly uses (37) is MUCH OLDER than the current reality that cff registry data is suggesting. So this logic doesn't make sense here.

 

[hmw]

Here's the thing.

This issue really isn't about the mindset parents need to have about their kids future (we parents can get great inspiration from you adults who have cf, no doubt about that, no matter what the cff tells us. it's one of the best things about this website imo.)

It also isn't really about the basic fact of whether or not things are better now than they used to be... I doubt any of us would argue that they are indeed better than they were in the past, by a long shot, and continue to get better due to improved therapies and better understanding of ways to improve health, avoid cross-contamination and so on.

What it IS about is the accuracy of the information being dispensed by the cff. I understand what those of you who are saying when you say don't get caught up in numbers. But here is the thing- those that don't know much about cf will hear numbers, and it's important that they hear the RIGHT ones. If the cff is going to give numbers, I don't want it to be 'projected' numbers. I want it to be numbers based on the reality we live in now, in 2010, because this is the world we live in now and the limitations we have to deal with when it comes to treatment etc. And because people who hear statistics are going to assume it means NOW, not what cff thinks will be the future of cf.

Oh, and while it is unfortunately true that a sick child will pull at more heartstrings in raising money, the number that cff commonly uses (37) is MUCH OLDER than the current reality that cff registry data is suggesting. So this logic doesn't make sense here.

 

[hmw]

Here's the thing.
<br />
<br />This issue really isn't about the mindset parents need to have about their kids future (we parents can get great inspiration from you adults who have cf, no doubt about that, no matter what the cff tells us. it's one of the best things about this website imo.)
<br />
<br />It also isn't really about the basic fact of whether or not things are better now than they used to be... I doubt any of us would argue that they are indeed better than they were in the past, by a long shot, and continue to get better due to improved therapies and better understanding of ways to improve health, avoid cross-contamination and so on.
<br />
<br />What it IS about is the accuracy of the information being dispensed by the cff. I understand what those of you who are saying when you say don't get caught up in numbers. But here is the thing- those that don't know much about cf will hear numbers, and it's important that they hear the RIGHT ones. If the cff is going to give numbers, I don't want it to be 'projected' numbers. I want it to be numbers based on the reality we live in now, in 2010, because this is the world we live in now and the limitations we have to deal with when it comes to treatment etc. And because people who hear statistics are going to assume it means NOW, not what cff thinks will be the future of cf.
<br />
<br />Oh, and while it is unfortunately true that a sick child will pull at more heartstrings in raising money, the number that cff commonly uses (37) is MUCH OLDER than the current reality that cff registry data is suggesting. So this logic doesn't make sense here.

 

[TestifyToLove]

I'm....

I don't even know what to say.

I knew CFF played with the numbers. just1more did an informal average from the memorials on this site and found the average to be 22. He spent a lot of time speaking with our CF center director and the man admitted his informal average was probably fairly close to accurate.

Its just...

I've held onto this hope and this stubborn determination that this child needed to see his 20th birthday. Everything about his life has been crap, absolute crap. Lousy bio-parents, severe complcations from his CF, liver cirrohsis (only 12% of CFers develop this complication, why HIM), not a candidate for a liver transplant, then Bipolar that requires liver taxing medication to stabilize him and finally Autism. In every opportunity God...the galaxy...whatever you want to call it...has had to give this child an acceptable hand in life or screw him over, he has been screwed over. And now, to see this. I already wasn't sure he was going to see 20. But, I hoped.

I continue to hope. But, tonight I feel absolutely sick to my stomach. Nothing in this child's life has EVER been fair. I guess I should quit waiting for him to finally catch a break. I should accept that there is nothing horrible I can protect him from, not even the reality of statistics of this disease.

I just really held out the belief that if the median was 37, an the average was likely early to mid 20s, then it wasn't unreasonable to hope he could see 20. Even after they told us no liver. Even after his vitamin levels started tanking. Even last week when we learned he's dropped to 5% in weight, despite 2200-2500cal/day. I still hoped we could get to 20. 20 seemed acceptable to believe that he had a real life at least and not the blink of an eye joke that his life thus far as been.