Been daydreaming about my son's future...

[LouLou]

This example shows how very different a median vs. an average really is...
If we could get the CFF to admit the average it would be much higher because all the adult onset diagnosis' would weigh a lot heavier.

A median is a middle number. So when they say the median is 36.8 they are referrring to someone's specific death at the age of 36 years and 9.6 months as reported in cf registries. Also remember not everyone is followed at accredited cf centers. Those patients aren't accounted for.

Median:
5 patients died at these ages. The median is 36.
1, 2, 36, 56, 65

Average:
5 patients died at these ages. The average is 36.6
5, 21, 32, 50, 75

We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.

I have it set in my Outlook to email them questioning this every 6 months. I've been doing it for a few years now and no one ever responds....hmmm....sort of makes you wonder doesn't it.

Long story short - don't rely on numbers anyone tells you about anything. Really no one has a clue...until there's a cure, there's going to be a lot of misinformation.

 

[LouLou]

This example shows how very different a median vs. an average really is...
If we could get the CFF to admit the average it would be much higher because all the adult onset diagnosis' would weigh a lot heavier.

A median is a middle number. So when they say the median is 36.8 they are referrring to someone's specific death at the age of 36 years and 9.6 months as reported in cf registries. Also remember not everyone is followed at accredited cf centers. Those patients aren't accounted for.

Median:
5 patients died at these ages. The median is 36.
1, 2, 36, 56, 65

Average:
5 patients died at these ages. The average is 36.6
5, 21, 32, 50, 75

We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.

I have it set in my Outlook to email them questioning this every 6 months. I've been doing it for a few years now and no one ever responds....hmmm....sort of makes you wonder doesn't it.

Long story short - don't rely on numbers anyone tells you about anything. Really no one has a clue...until there's a cure, there's going to be a lot of misinformation.

 

[LouLou]

This example shows how very different a median vs. an average really is...
If we could get the CFF to admit the average it would be much higher because all the adult onset diagnosis' would weigh a lot heavier.

A median is a middle number. So when they say the median is 36.8 they are referrring to someone's specific death at the age of 36 years and 9.6 months as reported in cf registries. Also remember not everyone is followed at accredited cf centers. Those patients aren't accounted for.

Median:
5 patients died at these ages. The median is 36.
1, 2, 36, 56, 65

Average:
5 patients died at these ages. The average is 36.6
5, 21, 32, 50, 75

We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.

I have it set in my Outlook to email them questioning this every 6 months. I've been doing it for a few years now and no one ever responds....hmmm....sort of makes you wonder doesn't it.

Long story short - don't rely on numbers anyone tells you about anything. Really no one has a clue...until there's a cure, there's going to be a lot of misinformation.

 

[LouLou]

This example shows how very different a median vs. an average really is...
If we could get the CFF to admit the average it would be much higher because all the adult onset diagnosis' would weigh a lot heavier.

A median is a middle number. So when they say the median is 36.8 they are referrring to someone's specific death at the age of 36 years and 9.6 months as reported in cf registries. Also remember not everyone is followed at accredited cf centers. Those patients aren't accounted for.

Median:
5 patients died at these ages. The median is 36.
1, 2, 36, 56, 65

Average:
5 patients died at these ages. The average is 36.6
5, 21, 32, 50, 75

We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.

I have it set in my Outlook to email them questioning this every 6 months. I've been doing it for a few years now and no one ever responds....hmmm....sort of makes you wonder doesn't it.

Long story short - don't rely on numbers anyone tells you about anything. Really no one has a clue...until there's a cure, there's going to be a lot of misinformation.

 

[LouLou]

This example shows how very different a median vs. an average really is...
If we could get the CFF to admit the average it would be much higher because all the adult onset diagnosis' would weigh a lot heavier.

A median is a middle number. So when they say the median is 36.8 they are referrring to someone's specific death at the age of 36 years and 9.6 months as reported in cf registries. Also remember not everyone is followed at accredited cf centers. Those patients aren't accounted for.

Median:
5 patients died at these ages. The median is 36.
1, 2, 36, 56, 65

Average:
5 patients died at these ages. The average is 36.6
5, 21, 32, 50, 75

We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.

I have it set in my Outlook to email them questioning this every 6 months. I've been doing it for a few years now and no one ever responds....hmmm....sort of makes you wonder doesn't it.

Long story short - don't rely on numbers anyone tells you about anything. Really no one has a clue...until there's a cure, there's going to be a lot of misinformation.

 

[LouLou]

This example shows how very different a median vs. an average really is...
If we could get the CFF to admit the average it would be much higher because all the adult onset diagnosis' would weigh a lot heavier.

A median is a middle number. So when they say the median is 36.8 they are referrring to someone's specific death at the age of 36 years and 9.6 months as reported in cf registries. Also remember not everyone is followed at accredited cf centers. Those patients aren't accounted for.

Median:
5 patients died at these ages. The median is 36.
1, 2, 36, 56, 65

Average:
5 patients died at these ages. The average is 36.6
5, 21, 32, 50, 75

We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.

I have it set in my Outlook to email them questioning this every 6 months. I've been doing it for a few years now and no one ever responds....hmmm....sort of makes you wonder doesn't it.

Long story short - don't rely on numbers anyone tells you about anything. Really no one has a clue...until there's a cure, there's going to be a lot of misinformation.

 

[Landy]

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


We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.
</end quote></div>

I've wondered this very thing. I suppose they never will have an accurate number, just a close number (due to undiagnosed cases, non compliant CFs not reporting to CF clinics, etc).
I've wondered if (approx.) the number of people born w/CF & the number of people who die w/CF on any given day are close to the same number (did that make sense<img src="i/expressions/face-icon-small-confused.gif" border="0">??
Just a theory.

 

[Landy]

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


We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.
</end quote></div>

I've wondered this very thing. I suppose they never will have an accurate number, just a close number (due to undiagnosed cases, non compliant CFs not reporting to CF clinics, etc).
I've wondered if (approx.) the number of people born w/CF & the number of people who die w/CF on any given day are close to the same number (did that make sense<img src="i/expressions/face-icon-small-confused.gif" border="0">??
Just a theory.

 

[Landy]

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


We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.
</end quote></div>

I've wondered this very thing. I suppose they never will have an accurate number, just a close number (due to undiagnosed cases, non compliant CFs not reporting to CF clinics, etc).
I've wondered if (approx.) the number of people born w/CF & the number of people who die w/CF on any given day are close to the same number (did that make sense<img src="i/expressions/face-icon-small-confused.gif" border="0">??
Just a theory.

 

[Landy]

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


We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.
</end quote></div>

I've wondered this very thing. I suppose they never will have an accurate number, just a close number (due to undiagnosed cases, non compliant CFs not reporting to CF clinics, etc).
I've wondered if (approx.) the number of people born w/CF & the number of people who die w/CF on any given day are close to the same number (did that make sense<img src="i/expressions/face-icon-small-confused.gif" border="0">??
Just a theory.

 

[Landy]

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


We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.
</end quote>

I've wondered this very thing. I suppose they never will have an accurate number, just a close number (due to undiagnosed cases, non compliant CFs not reporting to CF clinics, etc).
I've wondered if (approx.) the number of people born w/CF & the number of people who die w/CF on any given day are close to the same number (did that make sense<img src="i/expressions/face-icon-small-confused.gif" border="0">??
Just a theory.

 

[Landy]

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


We need to demand for accurate data. The one that really ruffles my feathers is that the CFF still reports 30,000 people with cf. They have said this number as long as I remember. Maybe even back when I was born in 1978. When is someone going to call them out on it? The number has to flucuate.
</end quote>

I've wondered this very thing. I suppose they never will have an accurate number, just a close number (due to undiagnosed cases, non compliant CFs not reporting to CF clinics, etc).
I've wondered if (approx.) the number of people born w/CF & the number of people who die w/CF on any given day are close to the same number (did that make sense<img src="i/expressions/face-icon-small-confused.gif" border="0">??
Just a theory.

 

[mom2lillian]

spacemom-

Just thought I would mention that some doctors do use the term 'mild' as indicative of certain genes not just its true terminology related to FEV1 as was previously described. In my clinic I am considered a 'mild' case not only becaue my FEV1 is so good but also because I have a rarish mutation that has been classified/published as having a 'dominant mild effect' and it is the 4th mutation to be classified as such. Do you know what mutations your son has, this woudl give you an idea as to what they ar referring to or if you still attend appointments you could just ask.

Most people with my mutation are diagnosed due to sinus trouble or are diagnosed during studies or now thanks to compulsatory testing in many states that way. I do very well right now but I dont think it matters one bit if I have a 'mild' form meaning my FEV1 is good and I have a 'mild' mutation.

While I do believ ethere is some correlations to phenotypes I dont believe there is enough knowwn about all the genes let alone all the combinations (phenotype) then you woudl also have to consider the modifier genes whcih we know next to nothing about. Then of course there are all the other factors mentioned which play the biggest role. Right now the argument of whether genes play a significant role in the progression of CF is much like the argument of nature vs nurture in my mind

If I dont do my meds etc I wont be 'mild' for long. Also as someone else mentioned all it takes is for me to pic up a nasty cepacia bug and I am in just as much trouble as the rest in that boat.

I dont know how much influence you have over a 20 year old son but I woudl encourage him to do all his therapies to preserve that good lung function and while considering his CF in life choices dont let it control him.

take care

 

[mom2lillian]

spacemom-

Just thought I would mention that some doctors do use the term 'mild' as indicative of certain genes not just its true terminology related to FEV1 as was previously described. In my clinic I am considered a 'mild' case not only becaue my FEV1 is so good but also because I have a rarish mutation that has been classified/published as having a 'dominant mild effect' and it is the 4th mutation to be classified as such. Do you know what mutations your son has, this woudl give you an idea as to what they ar referring to or if you still attend appointments you could just ask.

Most people with my mutation are diagnosed due to sinus trouble or are diagnosed during studies or now thanks to compulsatory testing in many states that way. I do very well right now but I dont think it matters one bit if I have a 'mild' form meaning my FEV1 is good and I have a 'mild' mutation.

While I do believ ethere is some correlations to phenotypes I dont believe there is enough knowwn about all the genes let alone all the combinations (phenotype) then you woudl also have to consider the modifier genes whcih we know next to nothing about. Then of course there are all the other factors mentioned which play the biggest role. Right now the argument of whether genes play a significant role in the progression of CF is much like the argument of nature vs nurture in my mind

If I dont do my meds etc I wont be 'mild' for long. Also as someone else mentioned all it takes is for me to pic up a nasty cepacia bug and I am in just as much trouble as the rest in that boat.

I dont know how much influence you have over a 20 year old son but I woudl encourage him to do all his therapies to preserve that good lung function and while considering his CF in life choices dont let it control him.

take care

 

[mom2lillian]

spacemom-

Just thought I would mention that some doctors do use the term 'mild' as indicative of certain genes not just its true terminology related to FEV1 as was previously described. In my clinic I am considered a 'mild' case not only becaue my FEV1 is so good but also because I have a rarish mutation that has been classified/published as having a 'dominant mild effect' and it is the 4th mutation to be classified as such. Do you know what mutations your son has, this woudl give you an idea as to what they ar referring to or if you still attend appointments you could just ask.

Most people with my mutation are diagnosed due to sinus trouble or are diagnosed during studies or now thanks to compulsatory testing in many states that way. I do very well right now but I dont think it matters one bit if I have a 'mild' form meaning my FEV1 is good and I have a 'mild' mutation.

While I do believ ethere is some correlations to phenotypes I dont believe there is enough knowwn about all the genes let alone all the combinations (phenotype) then you woudl also have to consider the modifier genes whcih we know next to nothing about. Then of course there are all the other factors mentioned which play the biggest role. Right now the argument of whether genes play a significant role in the progression of CF is much like the argument of nature vs nurture in my mind

If I dont do my meds etc I wont be 'mild' for long. Also as someone else mentioned all it takes is for me to pic up a nasty cepacia bug and I am in just as much trouble as the rest in that boat.

I dont know how much influence you have over a 20 year old son but I woudl encourage him to do all his therapies to preserve that good lung function and while considering his CF in life choices dont let it control him.

take care

 

[mom2lillian]

spacemom-

Just thought I would mention that some doctors do use the term 'mild' as indicative of certain genes not just its true terminology related to FEV1 as was previously described. In my clinic I am considered a 'mild' case not only becaue my FEV1 is so good but also because I have a rarish mutation that has been classified/published as having a 'dominant mild effect' and it is the 4th mutation to be classified as such. Do you know what mutations your son has, this woudl give you an idea as to what they ar referring to or if you still attend appointments you could just ask.

Most people with my mutation are diagnosed due to sinus trouble or are diagnosed during studies or now thanks to compulsatory testing in many states that way. I do very well right now but I dont think it matters one bit if I have a 'mild' form meaning my FEV1 is good and I have a 'mild' mutation.

While I do believ ethere is some correlations to phenotypes I dont believe there is enough knowwn about all the genes let alone all the combinations (phenotype) then you woudl also have to consider the modifier genes whcih we know next to nothing about. Then of course there are all the other factors mentioned which play the biggest role. Right now the argument of whether genes play a significant role in the progression of CF is much like the argument of nature vs nurture in my mind

If I dont do my meds etc I wont be 'mild' for long. Also as someone else mentioned all it takes is for me to pic up a nasty cepacia bug and I am in just as much trouble as the rest in that boat.

I dont know how much influence you have over a 20 year old son but I woudl encourage him to do all his therapies to preserve that good lung function and while considering his CF in life choices dont let it control him.

take care

 

[mom2lillian]

spacemom-

Just thought I would mention that some doctors do use the term 'mild' as indicative of certain genes not just its true terminology related to FEV1 as was previously described. In my clinic I am considered a 'mild' case not only becaue my FEV1 is so good but also because I have a rarish mutation that has been classified/published as having a 'dominant mild effect' and it is the 4th mutation to be classified as such. Do you know what mutations your son has, this woudl give you an idea as to what they ar referring to or if you still attend appointments you could just ask.

Most people with my mutation are diagnosed due to sinus trouble or are diagnosed during studies or now thanks to compulsatory testing in many states that way. I do very well right now but I dont think it matters one bit if I have a 'mild' form meaning my FEV1 is good and I have a 'mild' mutation.

While I do believ ethere is some correlations to phenotypes I dont believe there is enough knowwn about all the genes let alone all the combinations (phenotype) then you woudl also have to consider the modifier genes whcih we know next to nothing about. Then of course there are all the other factors mentioned which play the biggest role. Right now the argument of whether genes play a significant role in the progression of CF is much like the argument of nature vs nurture in my mind

If I dont do my meds etc I wont be 'mild' for long. Also as someone else mentioned all it takes is for me to pic up a nasty cepacia bug and I am in just as much trouble as the rest in that boat.

I dont know how much influence you have over a 20 year old son but I woudl encourage him to do all his therapies to preserve that good lung function and while considering his CF in life choices dont let it control him.

take care

 

[mom2lillian]

spacemom-

Just thought I would mention that some doctors do use the term 'mild' as indicative of certain genes not just its true terminology related to FEV1 as was previously described. In my clinic I am considered a 'mild' case not only becaue my FEV1 is so good but also because I have a rarish mutation that has been classified/published as having a 'dominant mild effect' and it is the 4th mutation to be classified as such. Do you know what mutations your son has, this woudl give you an idea as to what they ar referring to or if you still attend appointments you could just ask.

Most people with my mutation are diagnosed due to sinus trouble or are diagnosed during studies or now thanks to compulsatory testing in many states that way. I do very well right now but I dont think it matters one bit if I have a 'mild' form meaning my FEV1 is good and I have a 'mild' mutation.

While I do believ ethere is some correlations to phenotypes I dont believe there is enough knowwn about all the genes let alone all the combinations (phenotype) then you woudl also have to consider the modifier genes whcih we know next to nothing about. Then of course there are all the other factors mentioned which play the biggest role. Right now the argument of whether genes play a significant role in the progression of CF is much like the argument of nature vs nurture in my mind

If I dont do my meds etc I wont be 'mild' for long. Also as someone else mentioned all it takes is for me to pic up a nasty cepacia bug and I am in just as much trouble as the rest in that boat.

I dont know how much influence you have over a 20 year old son but I woudl encourage him to do all his therapies to preserve that good lung function and while considering his CF in life choices dont let it control him.

take care

 

[spacemom]

Thanks for all the input! The issue is much clearer for me now!

Thanks to Claudette and Lauren for clarifying about the <b>median </b>of 36.8 not life expectancy as I had wrongly assumed! And for explaining the difference between median and average, which I should remember from my 7th grade daughter's math classes which I was helping her with <img src="i/expressions/face-icon-small-smile.gif" border="0"> not from my own classes 35 or 40 years ago (ouch!!) <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also thanks rvm for the interesting Barcelona study, and everybody for sharing your own and chidren's experience about the exact use of "mild".

many thanks Diane, Lynda and Nicole for alerting me to the importance of steering clear of bugs even if I have to wipe everything out myself, and how it's fundamental to stick to the medications. I'll be sure to pass all that info to my son, who sometimes moans and groans about all the stuff he has to inhale and swallow... but he has to know how vital that is.

THANKS A MILLION from the both of us and best of luck to you all!!!!

 

[spacemom]

Thanks for all the input! The issue is much clearer for me now!

Thanks to Claudette and Lauren for clarifying about the <b>median </b>of 36.8 not life expectancy as I had wrongly assumed! And for explaining the difference between median and average, which I should remember from my 7th grade daughter's math classes which I was helping her with <img src="i/expressions/face-icon-small-smile.gif" border="0"> not from my own classes 35 or 40 years ago (ouch!!) <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also thanks rvm for the interesting Barcelona study, and everybody for sharing your own and chidren's experience about the exact use of "mild".

many thanks Diane, Lynda and Nicole for alerting me to the importance of steering clear of bugs even if I have to wipe everything out myself, and how it's fundamental to stick to the medications. I'll be sure to pass all that info to my son, who sometimes moans and groans about all the stuff he has to inhale and swallow... but he has to know how vital that is.

THANKS A MILLION from the both of us and best of luck to you all!!!!