Opening a can o' worms

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Printer

Active member
Harriett:

It is interesting that you feel "under attack" because that was the way that I felt when I read the opening posts of this thread by you and Katie. What I heard you say was my DD is very sick and those over 40 were never very sick. My DD has REAL CF and those over 40 have SOMETHING ELSE.

I was, and still am, offended by your and Katies position and yes you and Katie are under attack because I don't have SOMETHING ELSE.

Bill
 
P

Printer

Active member
Harriett:
<br />
<br />It is interesting that you feel "under attack" because that was the way that I felt when I read the opening posts of this thread by you and Katie. What I heard you say was my DD is very sick and those over 40 were never very sick. My DD has REAL CF and those over 40 have SOMETHING ELSE.
<br />
<br />I was, and still am, offended by your and Katies position and yes you and Katie are under attack because I don't have SOMETHING ELSE.
<br />
<br />Bill
 
K

kitomd21

New member
Bill - I never intimated that you have anything other than CF. I was postulating that there are two divergent groups of CF - those over 40 and diagnosed later in life and those over 40 and diagnosed closer to my daughter's age. We are parents trying to understand their child's disease progression - a little insight was what I was aiming toward.
 
K

kitomd21

New member
Bill - I never intimated that you have anything other than CF. I was postulating that there are two divergent groups of CF - those over 40 and diagnosed later in life and those over 40 and diagnosed closer to my daughter's age. We are parents trying to understand their child's disease progression - a little insight was what I was aiming toward.
 
K

kitomd21

New member
Bill - I never intimated that you have anything other than CF. I was postulating that there are two divergent groups of CF - those over 40 and diagnosed later in life and those over 40 and diagnosed closer to my daughter's age. We are parents trying to understand their child's disease progression - a little insight was what I was aiming toward.
 
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Mistyjo

New member
My heart goes out to everyone who has to deal with any illness whether it's you or your child. There is definitely a wide range of severity for cf. My daughter as of now is only diagnosed as cf metabolic syndrome. She is failure to thrive and chronic constipation. She has had bowel resection where they removed 28 inches of her colon. To be honest, I don't care if she is ever diagnosed as typical cf, I only care that she gets the care she needs.
I want to comment on the severity of this disease vs other diseases. My neice passed away when she was 10 yrs old from Luekemia and another little girl the same age, the same disease lived! Just because two people have the same disease doesn't mean their symptoms will be the same severity or even the same symptoms. Cf is NOT exactly the same for everyone. I don't know of any disease that causes the exact same severity of symptoms or the exact same symtpoms in anyone. Only God knows why some people have more severe symptoms than others or why some live to be adults and others don't. It's almost like saying someone who had cancer and it was mild doesn't have the right to say they had cancer because it wasn't as bad as my neices who lived in icu for 12 months and had bone marrow transplant and did everything possible to save her and it didn't work. They still had cancer regardless of how mild the disease was.
 
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Mistyjo

New member
My heart goes out to everyone who has to deal with any illness whether it's you or your child. There is definitely a wide range of severity for cf. My daughter as of now is only diagnosed as cf metabolic syndrome. She is failure to thrive and chronic constipation. She has had bowel resection where they removed 28 inches of her colon. To be honest, I don't care if she is ever diagnosed as typical cf, I only care that she gets the care she needs.
I want to comment on the severity of this disease vs other diseases. My neice passed away when she was 10 yrs old from Luekemia and another little girl the same age, the same disease lived! Just because two people have the same disease doesn't mean their symptoms will be the same severity or even the same symptoms. Cf is NOT exactly the same for everyone. I don't know of any disease that causes the exact same severity of symptoms or the exact same symtpoms in anyone. Only God knows why some people have more severe symptoms than others or why some live to be adults and others don't. It's almost like saying someone who had cancer and it was mild doesn't have the right to say they had cancer because it wasn't as bad as my neices who lived in icu for 12 months and had bone marrow transplant and did everything possible to save her and it didn't work. They still had cancer regardless of how mild the disease was.
 
M

Mistyjo

New member
My heart goes out to everyone who has to deal with any illness whether it's you or your child. There is definitely a wide range of severity for cf. My daughter as of now is only diagnosed as cf metabolic syndrome. She is failure to thrive and chronic constipation. She has had bowel resection where they removed 28 inches of her colon. To be honest, I don't care if she is ever diagnosed as typical cf, I only care that she gets the care she needs.
<br />I want to comment on the severity of this disease vs other diseases. My neice passed away when she was 10 yrs old from Luekemia and another little girl the same age, the same disease lived! Just because two people have the same disease doesn't mean their symptoms will be the same severity or even the same symptoms. Cf is NOT exactly the same for everyone. I don't know of any disease that causes the exact same severity of symptoms or the exact same symtpoms in anyone. Only God knows why some people have more severe symptoms than others or why some live to be adults and others don't. It's almost like saying someone who had cancer and it was mild doesn't have the right to say they had cancer because it wasn't as bad as my neices who lived in icu for 12 months and had bone marrow transplant and did everything possible to save her and it didn't work. They still had cancer regardless of how mild the disease was.
 
J

just1more

New member
Ok, having waded into this thread as a father and obviously not getting anywhere at this point I'm going to step back from the debate completely from a personal standpoint. I take full responsbility for what I posted yesterday, that said: this is a community forum, for people from all walks of life impacted by Cystic Fibrosis. While opinions, even heated or controversial ones, are welcome; at no point are direct attacks appropriate. Therefore, I will suggest strongly that this thread be allowed to wind down naturally as it is clear there will be no resolution and to continue serves no purpose to the community.
 
J

just1more

New member
Ok, having waded into this thread as a father and obviously not getting anywhere at this point I'm going to step back from the debate completely from a personal standpoint. I take full responsbility for what I posted yesterday, that said: this is a community forum, for people from all walks of life impacted by Cystic Fibrosis. While opinions, even heated or controversial ones, are welcome; at no point are direct attacks appropriate. Therefore, I will suggest strongly that this thread be allowed to wind down naturally as it is clear there will be no resolution and to continue serves no purpose to the community.
 
J

just1more

New member
Ok, having waded into this thread as a father and obviously not getting anywhere at this point I'm going to step back from the debate completely from a personal standpoint. <BR><BR>I take full responsbility for what I posted yesterday, that said: this is a community forum, for people from all walks of life impacted by Cystic Fibrosis. While opinions, even heated or controversial ones, are welcome; at no point are direct attacks appropriate. <BR><BR>Therefore, I will suggest strongly that this thread be allowed to wind down naturally as it is clear there will be no resolution and to continue serves no purpose to the community.
 
P

Printer

Active member
Tom:

I hope that you mean my posting. You wanted someone to look you in the face, I did. If you consider that a direct attack, so be it.

Bill
 
P

Printer

Active member
Tom:

I hope that you mean my posting. You wanted someone to look you in the face, I did. If you consider that a direct attack, so be it.

Bill
 
P

Printer

Active member
Tom:
<br />
<br />I hope that you mean my posting. You wanted someone to look you in the face, I did. If you consider that a direct attack, so be it.
<br />
<br />Bill
 
H

Havoc

New member
Here is a publication on lung function decline in patients with CF and the contributing factors. Perhaps this can clear some things up for people and bring this back to a scientific discussion.

http://chestjournal.chestpubs.org/content/126/2/412.full.pdf
 
H

Havoc

New member
Here is a publication on lung function decline in patients with CF and the contributing factors. Perhaps this can clear some things up for people and bring this back to a scientific discussion.

http://chestjournal.chestpubs.org/content/126/2/412.full.pdf
 
H

Havoc

New member
Here is a publication on lung function decline in patients with CF and the contributing factors. Perhaps this can clear some things up for people and bring this back to a scientific discussion.
<br />
<br />http://chestjournal.chestpubs.org/content/126/2/412.full.pdf
 
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