I may elicit a range of responses with this post. In reviewing an alternate topic about those with CF and over 40...many of you were diagnosed quite late in life. It almost seems like there should to be two categories for those with CF. Those over 40 who were diagnosed later in life and those that are over 40 that were diagnosed early in life. My daughter certainly couldn't have been diagnosed later in life given that she is homozygous d508. In reality, she probably wouldn't be alive today without her early diagnosis. It doesn't seem fair to look at prognosis for my daughter based upon those who were diagnosed over 20, 30, and beyond. I'm not disputing that CF affects everyone differently...whatever the mutations may be...but, I find it hard to relate those diagnosed so late in life with those diagnosed at young ages due to failure to thrive, heightened lung involvement, etc. and the "over 40 status". It would seem that these individuals fair better than others as their symptoms likely weren't severe as exemplified by their late diagnosis...thoughts?<br><br><br>
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Opening a can o' worms
- Thread starter kitomd21
- Start date
I may elicit a range of responses with this post. In reviewing an alternate topic about those with CF and over 40...many of you were diagnosed quite late in life. It almost seems like there should to be two categories for those with CF. Those over 40 who were diagnosed later in life and those that are over 40 that were diagnosed early in life. My daughter certainly couldn't have been diagnosed later in life given that she is homozygous d508. In reality, she probably wouldn't be alive today without her early diagnosis. It doesn't seem fair to look at prognosis for my daughter based upon those who were diagnosed over 20, 30, and beyond. I'm not disputing that CF affects everyone differently...whatever the mutations may be...but, I find it hard to relate those diagnosed so late in life with those diagnosed at young ages due to failure to thrive, heightened lung involvement, etc. and the "over 40 status". It would seem that these individuals fair better than others as their symptoms likely weren't severe as exemplified by their late diagnosis...thoughts?<br><br><br>
I may elicit a range of responses with this post. In reviewing an alternate topic about those with CF and over 40...many of you were diagnosed quite late in life. It almost seems like there should to be two categories for those with CF. Those over 40 who were diagnosed later in life and those that are over 40 that were diagnosed early in life. My daughter certainly couldn't have been diagnosed later in life given that she is homozygous d508. In reality, she probably wouldn't be alive today without her early diagnosis. It doesn't seem fair to look at prognosis for my daughter based upon those who were diagnosed over 20, 30, and beyond. I'm not disputing that CF affects everyone differently...whatever the mutations may be...but, I find it hard to relate those diagnosed so late in life with those diagnosed at young ages due to failure to thrive, heightened lung involvement, etc. and the "over 40 status". It would seem that these individuals fair better than others as their symptoms likely weren't severe as exemplified by their late diagnosis...thoughts?<br><br><br>
That's the thing, CF has such a wide spectrum. I am 39 and also a late diagnosis (33). However, my FEV is in the mid 30's on a good day. I am disabled, on O2 and have other issues. My diagnosis probably should have been made earlier the more I think about it....so many years went by with doctors saying that my lungs were crappy because of "asthma". It took a very smart primary care MD to even consider CF. The rest is history.
Some of those with late diagnosis are doing well and have good FEV's, but there are also others who have had lung transplants. So I am not sure if I would separate CF'ers like that....Conversely, there are classic CF'ers (who were diagnosed young in life) who have good FEV's at my age. It just goes to show that CF has quite a range, early diagnosis or not.
Jenn 39 w/ CF
Some of those with late diagnosis are doing well and have good FEV's, but there are also others who have had lung transplants. So I am not sure if I would separate CF'ers like that....Conversely, there are classic CF'ers (who were diagnosed young in life) who have good FEV's at my age. It just goes to show that CF has quite a range, early diagnosis or not.
Jenn 39 w/ CF
That's the thing, CF has such a wide spectrum. I am 39 and also a late diagnosis (33). However, my FEV is in the mid 30's on a good day. I am disabled, on O2 and have other issues. My diagnosis probably should have been made earlier the more I think about it....so many years went by with doctors saying that my lungs were crappy because of "asthma". It took a very smart primary care MD to even consider CF. The rest is history.
Some of those with late diagnosis are doing well and have good FEV's, but there are also others who have had lung transplants. So I am not sure if I would separate CF'ers like that....Conversely, there are classic CF'ers (who were diagnosed young in life) who have good FEV's at my age. It just goes to show that CF has quite a range, early diagnosis or not.
Jenn 39 w/ CF
Some of those with late diagnosis are doing well and have good FEV's, but there are also others who have had lung transplants. So I am not sure if I would separate CF'ers like that....Conversely, there are classic CF'ers (who were diagnosed young in life) who have good FEV's at my age. It just goes to show that CF has quite a range, early diagnosis or not.
Jenn 39 w/ CF
That's the thing, CF has such a wide spectrum. I am 39 and also a late diagnosis (33). However, my FEV is in the mid 30's on a good day. I am disabled, on O2 and have other issues. My diagnosis probably should have been made earlier the more I think about it....so many years went by with doctors saying that my lungs were crappy because of "asthma". It took a very smart primary care MD to even consider CF. The rest is history.
<br />Some of those with late diagnosis are doing well and have good FEV's, but there are also others who have had lung transplants. So I am not sure if I would separate CF'ers like that....Conversely, there are classic CF'ers (who were diagnosed young in life) who have good FEV's at my age. It just goes to show that CF has quite a range, early diagnosis or not.
<br />Jenn 39 w/ CF
<br />Some of those with late diagnosis are doing well and have good FEV's, but there are also others who have had lung transplants. So I am not sure if I would separate CF'ers like that....Conversely, there are classic CF'ers (who were diagnosed young in life) who have good FEV's at my age. It just goes to show that CF has quite a range, early diagnosis or not.
<br />Jenn 39 w/ CF
Yeah, I've been having trouble with that one myself lately.
<br>
<br>I am the type that needs to KNOW as much as possible about this disease in order to wrap my head around it all. I know going in that a big chunk of that reality won't be pleasant. I can handle it. I also know that some reality is quite positive, that some out there are quite a bit older and have pft's over 100% and are running marathons and holding down 2 jobs and having families and overall living like anyone else.
<br>
<br>What I want to know is who is doing all of that as people who were dx'ed YOUNG, and were experiencing significant disease involvement YOUNG, with progression YOUNG, versus those who escaped dx entirely during early decades of life?
<br>
<br>I know... many who escaped dx may have been often sick, etc, or knew something was wrong but didn't know what. But- symptomatic, progressive disease in a young child that wouldn't even survive without dx and treatment is a different game entirely vs. illness that was managed, even if unpleasant at times (I know there are some exceptions of course- it's not black and white.) Emily was in such growth failure by the time she was dx'ed at 7, for example, that we were told she was an example of exactly why CF was called in past 'a wasting disease.'
<br>
<br>I have been struggling with this as well, due to seeing increased disease progression of late too in my daughter despite trying SO HARD to help her. I am so inspired by the adults here who can do so much, and it makes me feel like I must be doing something so incredibly WRONG to see her struggle as she does.<br>
<br>
<br>I am the type that needs to KNOW as much as possible about this disease in order to wrap my head around it all. I know going in that a big chunk of that reality won't be pleasant. I can handle it. I also know that some reality is quite positive, that some out there are quite a bit older and have pft's over 100% and are running marathons and holding down 2 jobs and having families and overall living like anyone else.
<br>
<br>What I want to know is who is doing all of that as people who were dx'ed YOUNG, and were experiencing significant disease involvement YOUNG, with progression YOUNG, versus those who escaped dx entirely during early decades of life?
<br>
<br>I know... many who escaped dx may have been often sick, etc, or knew something was wrong but didn't know what. But- symptomatic, progressive disease in a young child that wouldn't even survive without dx and treatment is a different game entirely vs. illness that was managed, even if unpleasant at times (I know there are some exceptions of course- it's not black and white.) Emily was in such growth failure by the time she was dx'ed at 7, for example, that we were told she was an example of exactly why CF was called in past 'a wasting disease.'
<br>
<br>I have been struggling with this as well, due to seeing increased disease progression of late too in my daughter despite trying SO HARD to help her. I am so inspired by the adults here who can do so much, and it makes me feel like I must be doing something so incredibly WRONG to see her struggle as she does.<br>
Yeah, I've been having trouble with that one myself lately.
<br>
<br>I am the type that needs to KNOW as much as possible about this disease in order to wrap my head around it all. I know going in that a big chunk of that reality won't be pleasant. I can handle it. I also know that some reality is quite positive, that some out there are quite a bit older and have pft's over 100% and are running marathons and holding down 2 jobs and having families and overall living like anyone else.
<br>
<br>What I want to know is who is doing all of that as people who were dx'ed YOUNG, and were experiencing significant disease involvement YOUNG, with progression YOUNG, versus those who escaped dx entirely during early decades of life?
<br>
<br>I know... many who escaped dx may have been often sick, etc, or knew something was wrong but didn't know what. But- symptomatic, progressive disease in a young child that wouldn't even survive without dx and treatment is a different game entirely vs. illness that was managed, even if unpleasant at times (I know there are some exceptions of course- it's not black and white.) Emily was in such growth failure by the time she was dx'ed at 7, for example, that we were told she was an example of exactly why CF was called in past 'a wasting disease.'
<br>
<br>I have been struggling with this as well, due to seeing increased disease progression of late too in my daughter despite trying SO HARD to help her. I am so inspired by the adults here who can do so much, and it makes me feel like I must be doing something so incredibly WRONG to see her struggle as she does.<br>
<br>
<br>I am the type that needs to KNOW as much as possible about this disease in order to wrap my head around it all. I know going in that a big chunk of that reality won't be pleasant. I can handle it. I also know that some reality is quite positive, that some out there are quite a bit older and have pft's over 100% and are running marathons and holding down 2 jobs and having families and overall living like anyone else.
<br>
<br>What I want to know is who is doing all of that as people who were dx'ed YOUNG, and were experiencing significant disease involvement YOUNG, with progression YOUNG, versus those who escaped dx entirely during early decades of life?
<br>
<br>I know... many who escaped dx may have been often sick, etc, or knew something was wrong but didn't know what. But- symptomatic, progressive disease in a young child that wouldn't even survive without dx and treatment is a different game entirely vs. illness that was managed, even if unpleasant at times (I know there are some exceptions of course- it's not black and white.) Emily was in such growth failure by the time she was dx'ed at 7, for example, that we were told she was an example of exactly why CF was called in past 'a wasting disease.'
<br>
<br>I have been struggling with this as well, due to seeing increased disease progression of late too in my daughter despite trying SO HARD to help her. I am so inspired by the adults here who can do so much, and it makes me feel like I must be doing something so incredibly WRONG to see her struggle as she does.<br>
Yeah, I've been having trouble with that one myself lately.
<br>
<br>I am the type that needs to KNOW as much as possible about this disease in order to wrap my head around it all. I know going in that a big chunk of that reality won't be pleasant. I can handle it. I also know that some reality is quite positive, that some out there are quite a bit older and have pft's over 100% and are running marathons and holding down 2 jobs and having families and overall living like anyone else.
<br>
<br>What I want to know is who is doing all of that as people who were dx'ed YOUNG, and were experiencing significant disease involvement YOUNG, with progression YOUNG, versus those who escaped dx entirely during early decades of life?
<br>
<br>I know... many who escaped dx may have been often sick, etc, or knew something was wrong but didn't know what. But- symptomatic, progressive disease in a young child that wouldn't even survive without dx and treatment is a different game entirely vs. illness that was managed, even if unpleasant at times (I know there are some exceptions of course- it's not black and white.) Emily was in such growth failure by the time she was dx'ed at 7, for example, that we were told she was an example of exactly why CF was called in past 'a wasting disease.'
<br>
<br>I have been struggling with this as well, due to seeing increased disease progression of late too in my daughter despite trying SO HARD to help her. I am so inspired by the adults here who can do so much, and it makes me feel like I must be doing something so incredibly WRONG to see her struggle as she does.<br>
<br>
<br>I am the type that needs to KNOW as much as possible about this disease in order to wrap my head around it all. I know going in that a big chunk of that reality won't be pleasant. I can handle it. I also know that some reality is quite positive, that some out there are quite a bit older and have pft's over 100% and are running marathons and holding down 2 jobs and having families and overall living like anyone else.
<br>
<br>What I want to know is who is doing all of that as people who were dx'ed YOUNG, and were experiencing significant disease involvement YOUNG, with progression YOUNG, versus those who escaped dx entirely during early decades of life?
<br>
<br>I know... many who escaped dx may have been often sick, etc, or knew something was wrong but didn't know what. But- symptomatic, progressive disease in a young child that wouldn't even survive without dx and treatment is a different game entirely vs. illness that was managed, even if unpleasant at times (I know there are some exceptions of course- it's not black and white.) Emily was in such growth failure by the time she was dx'ed at 7, for example, that we were told she was an example of exactly why CF was called in past 'a wasting disease.'
<br>
<br>I have been struggling with this as well, due to seeing increased disease progression of late too in my daughter despite trying SO HARD to help her. I am so inspired by the adults here who can do so much, and it makes me feel like I must be doing something so incredibly WRONG to see her struggle as she does.<br>
IVWinchester79
New member
<br>I didn't even know that CF could be diagnosed late until I was fifteen and watched a documentary about genetics in biology. I felt pretty stupid. Still do, guess I should have done more research.
IVWinchester79
New member
<br>I didn't even know that CF could be diagnosed late until I was fifteen and watched a documentary about genetics in biology. I felt pretty stupid. Still do, guess I should have done more research.
IVWinchester79
New member
<p><br>I didn't even know that CF could be diagnosed late until I was fifteen and watched a documentary about genetics in biology. I felt pretty stupid. Still do, guess I should have done more research.
I have to admit, I just found this forum not to long ago and was really shocked by all the late dx I was seeing. I thought that they were very few and far between until now. I kinda feel this same as Harriett. I want to learn everything there is to know and be prepared for as much as possible. Kinda makes you wonder about the whole median age as well with all the late dx. Not that it matters because I do believe that evey case is different and God will take you when he is ready, we try to live life to the fullest everyday because we could all go at any time, but I've been wondering how accurate that median age really is after keeping up with these forums. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I truly belive that I would not have my baby girl if they had not caught her dx when they did.
I have to admit, I just found this forum not to long ago and was really shocked by all the late dx I was seeing. I thought that they were very few and far between until now. I kinda feel this same as Harriett. I want to learn everything there is to know and be prepared for as much as possible. Kinda makes you wonder about the whole median age as well with all the late dx. Not that it matters because I do believe that evey case is different and God will take you when he is ready, we try to live life to the fullest everyday because we could all go at any time, but I've been wondering how accurate that median age really is after keeping up with these forums. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I truly belive that I would not have my baby girl if they had not caught her dx when they did.
I have to admit, I just found this forum not to long ago and was really shocked by all the late dx I was seeing. I thought that they were very few and far between until now. I kinda feel this same as Harriett. I want to learn everything there is to know and be prepared for as much as possible. Kinda makes you wonder about the whole median age as well with all the late dx. Not that it matters because I do believe that evey case is different and God will take you when he is ready, we try to live life to the fullest everyday because we could all go at any time, but I've been wondering how accurate that median age really is after keeping up with these forums. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I truly belive that I would not have my baby girl if they had not caught her dx when they did.
I was dx at age 47. If I were 3 today I would be dx today. Those of us who are older, in many cases, were either mis-diagnosed or were treated by Doctors who were "ignorant" of CF at that time. I saw a chart on here and according to that chart my case is in the top 10% for most severe.
Bill
Bill
I was dx at age 47. If I were 3 today I would be dx today. Those of us who are older, in many cases, were either mis-diagnosed or were treated by Doctors who were "ignorant" of CF at that time. I saw a chart on here and according to that chart my case is in the top 10% for most severe.
Bill
Bill