tough topic- portrayed life expectancy

StillFighting · Jul 10, 2011

Sara,
 
 I have always questioned the statistics as well and how the data is accumulated. You raise a valid point. If so many have passed away (on this site alone) before the age of 37 and we use this site as a representative population, then how can the median age actually be 37?
 
 It would be interesting to challenge these claims. Perhaps CFF can offer an explanation to these statistics.
 
 Regards,
 
 Ana

hmw · Jul 10, 2011

Not only is CF so changeable, but trying to classify it (mild to severe) doesn't take into consideration what a multi-system disease it is and how severely other parts of the body can be affected regardless of one's pulmonary function.

<div class="FTQUOTE"><begin quote>If so many have passed away (on this site alone) before the age of 37 and we use this site as a representative population, then how can the median age actually be 37?</end quote></div>
It's because it is a 'projected' median, what today's children are looking at. The average age at death right now is considerably younger.

As far as I am concerned, I'm not interested in anyone's 'projections.' We live in the here and now, with the realities of the here and now. They have no idea what's going to come, for good or otherwise. Only time will tell.

hmw · Jul 10, 2011

Not only is CF so changeable, but trying to classify it (mild to severe) doesn't take into consideration what a multi-system disease it is and how severely other parts of the body can be affected regardless of one's pulmonary function.

<div class="FTQUOTE"><begin quote>If so many have passed away (on this site alone) before the age of 37 and we use this site as a representative population, then how can the median age actually be 37?</end quote>
It's because it is a 'projected' median, what today's children are looking at. The average age at death right now is considerably younger.

As far as I am concerned, I'm not interested in anyone's 'projections.' We live in the here and now, with the realities of the here and now. They have no idea what's going to come, for good or otherwise. Only time will tell.

hmw · Jul 10, 2011

Not only is CF so changeable, but trying to classify it (mild to severe) doesn't take into consideration what a multi-system disease it is and how severely other parts of the body can be affected regardless of one's pulmonary function.
 
 <div class="FTQUOTE"><begin quote>If so many have passed away (on this site alone) before the age of 37 and we use this site as a representative population, then how can the median age actually be 37?</end quote>
 It's because it is a 'projected' median, what today's children are looking at. The average age at death right now is considerably younger.
 
 As far as I am concerned, I'm not interested in anyone's 'projections.' We live in the here and now, with the realities of the here and now. They have no idea what's going to come, for good or otherwise. Only time will tell.

mamerth · Jul 11, 2011

I was one of those people who were told they had a "mild case" of CF. I have made it to 38 years of age (as of today). I did pretty good for a while and then my lung took a nose dive. I don't consider myself mild anymore.

I think it is pretty hard to come up with a projected age of survival. Everyone's CF is different... gene mutations are different...

My doctors never gave me projected age of survival... they just said we would take it one year at a time. I think with this disease that is all you can do... be thankful for each year, each month and each day.

mamerth · Jul 11, 2011

I was one of those people who were told they had a "mild case" of CF. I have made it to 38 years of age (as of today). I did pretty good for a while and then my lung took a nose dive. I don't consider myself mild anymore.

I think it is pretty hard to come up with a projected age of survival. Everyone's CF is different... gene mutations are different...

My doctors never gave me projected age of survival... they just said we would take it one year at a time. I think with this disease that is all you can do... be thankful for each year, each month and each day.

mamerth · Jul 11, 2011

I was one of those people who were told they had a "mild case" of CF. I have made it to 38 years of age (as of today). I did pretty good for a while and then my lung took a nose dive. I don't consider myself mild anymore.
 
 I think it is pretty hard to come up with a projected age of survival. Everyone's CF is different... gene mutations are different...
 
 My doctors never gave me projected age of survival... they just said we would take it one year at a time. I think with this disease that is all you can do... be thankful for each year, each month and each day.

Printer · Jul 11, 2011

Sara:

I'm 71 with CF. Some would say I have a "mild case" because my FEV1 is in the mid 70s. I was 15 before CF had a name and then only infants had CF. I was dx at age 47 but before that time I had half of my stomach removed, I was hospitalized over 60 times for pancreatititis, had common duct surgery and had my gall bladder removed (all CF related). While I don't have diabeties, my pancrease produces zero enzymes. Some would say because of the digestive issues listed above, that I'm in the worst 10%.

The CFF Annual Report states that there are people as old as 85 with CF.

There will be a cure in your lifetime.

Bill

Printer · Jul 11, 2011

Sara:

I'm 71 with CF. Some would say I have a "mild case" because my FEV1 is in the mid 70s. I was 15 before CF had a name and then only infants had CF. I was dx at age 47 but before that time I had half of my stomach removed, I was hospitalized over 60 times for pancreatititis, had common duct surgery and had my gall bladder removed (all CF related). While I don't have diabeties, my pancrease produces zero enzymes. Some would say because of the digestive issues listed above, that I'm in the worst 10%.

The CFF Annual Report states that there are people as old as 85 with CF.

There will be a cure in your lifetime.

Bill

Printer · Jul 11, 2011

Sara:
 
 I'm 71 with CF. Some would say I have a "mild case" because my FEV1 is in the mid 70s. I was 15 before CF had a name and then only infants had CF. I was dx at age 47 but before that time I had half of my stomach removed, I was hospitalized over 60 times for pancreatititis, had common duct surgery and had my gall bladder removed (all CF related). While I don't have diabeties, my pancrease produces zero enzymes. Some would say because of the digestive issues listed above, that I'm in the worst 10%.
 
 The CFF Annual Report states that there are people as old as 85 with CF.
 
 There will be a cure in your lifetime.
 
 Bill

Lex · Jul 13, 2011

Let's make this topic even more confusing.

I had a double lung TX---so, technically I should've died at 31. I'm still around, though--with CF.

What does THAT do to the stats?

Lex · Jul 13, 2011

Let's make this topic even more confusing.

I had a double lung TX---so, technically I should've died at 31. I'm still around, though--with CF.

What does THAT do to the stats?

Lex · Jul 13, 2011

Let's make this topic even more confusing.
 
 I had a double lung TX---so, technically I should've died at 31. I'm still around, though--with CF.
 
 What does THAT do to the stats?

kmaried · Jul 13, 2011

Lex - <div> </div><div>In terms of CFF statistics, a person who has a lung transplant is considered to have 'died'. (I'm so sorry to say that - it sounds so harsh! I couldn't think of any other way to say it) But at that point, available CF treatment has failed, so for statistical purposes it makes sense. </div><div> </div><div>Kris</div>

kmaried · Jul 13, 2011

Lex - In terms of CFF statistics, a person who has a lung transplant is considered to have 'died'. (I'm so sorry to say that - it sounds so harsh! I couldn't think of any other way to say it) But at that point, available CF treatment has failed, so for statistical purposes it makes sense. Kris

kmaried · Jul 13, 2011

Lex - In terms of CFF statistics, a person who has a lung transplant is considered to have 'died'. (I'm so sorry to say that - it sounds so harsh! I couldn't think of any other way to say it) But at that point, available CF treatment has failed, so for statistical purposes it makes sense. Kris

icefisherman · Jul 14, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Momto2

OK, I know this is a loaded subject. I'm a 40 year old DDF508, diagnosed at 3 months after severe failure to thrive, pneumnia, pneumothorax, etc, etc. Over the years, I have met about 20 people with CF, and with the exception of 2, all were all younger than I. At this point, they have all passed away prior to age 34, and I am the last of my childhood cohort. What I do not understand is how many pamphlets and websites state that "people with CF can now live relatively healthy and normal lives" and that the "life expectancy is now 37 and climbing". How can this possibly be true? Are they talking about children born today have that life expectancy? Or due to genetic testing are they including people diagnosed at age 50 or even 60 into the stats to make them look a heck of a lot better? These statements go against everything I have seen and experienced. Now, I've never met someone with "mild CF", although I know from the internet that they certainly exist. It seems much more honest to have CF broken up into a few categories of mild, moderate, severe, and give the stats for that. I look at the pamphlets, read the stuff, and shake my head. I know the powers that be dont want to scare kids and new CF parents, but I think they often trivialize the disease. I have seen plenty of parents of young kids and teens who are really struggling. Anyone have an opinion on this? Similar experiences, similar questions? I dont know who else to ask..........

</end quote></div> 
thank you , thank you, thank you. The stats are inflated to say the least. They have made great leaps in finding new and milder cases of cf, but that shouldn't be portrayed as progress in medical advancements. A great example, and this is a quote from a cf rep. on the news. " 20 years ago it was almost unheard of to have people with cf living past thier teens, now we have people living into thier 50's and 60's" Well 20 years ago those people were in thier 30's and 40's. But we have to remember that part of the reason they are doing this is because they don't want to scare a newly diagnosed "healthy" cfer with the old stats. CF is so different for all of us. My boss ever told me "People with cf live to be 80 now" and another guy said "well what you have isn't life theatening" as he was talking about his asthma (hes in his mid 40's). Not many people know i have cf, and i like to keep it that way for this reason. I just smile and nod when people say "smoke another one" or "you gonna live?" Thats easier to deal with than people marketing a disease to raise money to fund drug companies to do research to make a drug to make more money off from us. UUGG sorry for the vent and maybe i went off topic but i'm glad i'm not the only one who sees it.

icefisherman · Jul 14, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Momto2

OK, I know this is a loaded subject. I'm a 40 year old DDF508, diagnosed at 3 months after severe failure to thrive, pneumnia, pneumothorax, etc, etc. Over the years, I have met about 20 people with CF, and with the exception of 2, all were all younger than I. At this point, they have all passed away prior to age 34, and I am the last of my childhood cohort. What I do not understand is how many pamphlets and websites state that "people with CF can now live relatively healthy and normal lives" and that the "life expectancy is now 37 and climbing". How can this possibly be true? Are they talking about children born today have that life expectancy? Or due to genetic testing are they including people diagnosed at age 50 or even 60 into the stats to make them look a heck of a lot better? These statements go against everything I have seen and experienced. Now, I've never met someone with "mild CF", although I know from the internet that they certainly exist. It seems much more honest to have CF broken up into a few categories of mild, moderate, severe, and give the stats for that. I look at the pamphlets, read the stuff, and shake my head. I know the powers that be dont want to scare kids and new CF parents, but I think they often trivialize the disease. I have seen plenty of parents of young kids and teens who are really struggling. Anyone have an opinion on this? Similar experiences, similar questions? I dont know who else to ask..........

</end quote> 
thank you , thank you, thank you. The stats are inflated to say the least. They have made great leaps in finding new and milder cases of cf, but that shouldn't be portrayed as progress in medical advancements. A great example, and this is a quote from a cf rep. on the news. " 20 years ago it was almost unheard of to have people with cf living past thier teens, now we have people living into thier 50's and 60's" Well 20 years ago those people were in thier 30's and 40's. But we have to remember that part of the reason they are doing this is because they don't want to scare a newly diagnosed "healthy" cfer with the old stats. CF is so different for all of us. My boss ever told me "People with cf live to be 80 now" and another guy said "well what you have isn't life theatening" as he was talking about his asthma (hes in his mid 40's). Not many people know i have cf, and i like to keep it that way for this reason. I just smile and nod when people say "smoke another one" or "you gonna live?" Thats easier to deal with than people marketing a disease to raise money to fund drug companies to do research to make a drug to make more money off from us. UUGG sorry for the vent and maybe i went off topic but i'm glad i'm not the only one who sees it.

icefisherman · Jul 14, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Momto2

OK, I know this is a loaded subject. I'm a 40 year old DDF508, diagnosed at 3 months after severe failure to thrive, pneumnia, pneumothorax, etc, etc. Over the years, I have met about 20 people with CF, and with the exception of 2, all were all younger than I. At this point, they have all passed away prior to age 34, and I am the last of my childhood cohort. What I do not understand is how many pamphlets and websites state that "people with CF can now live relatively healthy and normal lives" and that the "life expectancy is now 37 and climbing". How can this possibly be true? Are they talking about children born today have that life expectancy? Or due to genetic testing are they including people diagnosed at age 50 or even 60 into the stats to make them look a heck of a lot better? These statements go against everything I have seen and experienced. Now, I've never met someone with "mild CF", although I know from the internet that they certainly exist. It seems much more honest to have CF broken up into a few categories of mild, moderate, severe, and give the stats for that. I look at the pamphlets, read the stuff, and shake my head. I know the powers that be dont want to scare kids and new CF parents, but I think they often trivialize the disease. I have seen plenty of parents of young kids and teens who are really struggling. Anyone have an opinion on this? Similar experiences, similar questions? I dont know who else to ask..........

</end quote> 
thank you , thank you, thank you. The stats are inflated to say the least. They have made great leaps in finding new and milder cases of cf, but that shouldn't be portrayed as progress in medical advancements. A great example, and this is a quote from a cf rep. on the news. " 20 years ago it was almost unheard of to have people with cf living past thier teens, now we have people living into thier 50's and 60's" Well 20 years ago those people were in thier 30's and 40's. But we have to remember that part of the reason they are doing this is because they don't want to scare a newly diagnosed "healthy" cfer with the old stats. CF is so different for all of us. My boss ever told me "People with cf live to be 80 now" and another guy said "well what you have isn't life theatening" as he was talking about his asthma (hes in his mid 40's). Not many people know i have cf, and i like to keep it that way for this reason. I just smile and nod when people say "smoke another one" or "you gonna live?" Thats easier to deal with than people marketing a disease to raise money to fund drug companies to do research to make a drug to make more money off from us. UUGG sorry for the vent and maybe i went off topic but i'm glad i'm not the only one who sees it.

icefisherman · Jul 14, 2011

edited, posted twice sorry

tough topic- portrayed life expectancy

New member

New member

New member

New member

New member

New member

New member

Active member

Active member

Active member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member