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Is Atypical CF really all that uncommon?
- Thread starter Juliet
- Start date
I have to say in my case it's denial! I just changed my profile. At first the Dr.s were calling it atypical b/c all of the tests were in the grey area. They are now calling it what it is CF. I say it and write it but still can't grasp that my 3 precious children have CF. There is nothing atypical about their symptoms.
They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
I have to say in my case it's denial! I just changed my profile. At first the Dr.s were calling it atypical b/c all of the tests were in the grey area. They are now calling it what it is CF. I say it and write it but still can't grasp that my 3 precious children have CF. There is nothing atypical about their symptoms.
They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
I have to say in my case it's denial! I just changed my profile. At first the Dr.s were calling it atypical b/c all of the tests were in the grey area. They are now calling it what it is CF. I say it and write it but still can't grasp that my 3 precious children have CF. There is nothing atypical about their symptoms.
They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
I have to say in my case it's denial! I just changed my profile. At first the Dr.s were calling it atypical b/c all of the tests were in the grey area. They are now calling it what it is CF. I say it and write it but still can't grasp that my 3 precious children have CF. There is nothing atypical about their symptoms.
They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
I have to say in my case it's denial! I just changed my profile. At first the Dr.s were calling it atypical b/c all of the tests were in the grey area. They are now calling it what it is CF. I say it and write it but still can't grasp that my 3 precious children have CF. There is nothing atypical about their symptoms.
<br />
<br />They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
<br />
<br />CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
<br />
<br />
<br />
<br />They all have classic CF symptoms and have from day one. We are the unfortunate ones who b/c of the standard tests missed out on years of tx. I have struggled with this for ever. I have thought about all the mean things I was going to say to all the Dr's who have FAILED my children. When I reread the medical charts that say "once again I spent the visit encouraging Mr.and Mrs. R to get behavioral therapy for their son b/c of stomach achs and constipation" i want to <img src="i/expressions/devil.gif" border="0">.The mature side kicks in and I think about my beautiful kids. I think about what I can do to prevent even one family from going through what we have gone through. I could go on all day!!!!
<br />
<br />CF is CF atypical or not. It's a nasty disease that my kids have and it needs to be cured!!
<br />
<br />
H
hopesiris
Guest
That term is used to. If you don't have it already, there is a book by Solvay Pharmaceuticals called Now That I Have CF and it is geared towards adult diagnosed cases. You can ask you clinic to get it for you. I think the medical info is a little bit outdated but it gives you a general idea of what can happen. It also addresses the issues unique to adult onset of the disease and adult diagnosis, like the emotional impact and financial considerations. I cried my way through parts of it but I felt SO much better to have my concerns addressed.
I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
H
hopesiris
Guest
That term is used to. If you don't have it already, there is a book by Solvay Pharmaceuticals called Now That I Have CF and it is geared towards adult diagnosed cases. You can ask you clinic to get it for you. I think the medical info is a little bit outdated but it gives you a general idea of what can happen. It also addresses the issues unique to adult onset of the disease and adult diagnosis, like the emotional impact and financial considerations. I cried my way through parts of it but I felt SO much better to have my concerns addressed.
I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
H
hopesiris
Guest
That term is used to. If you don't have it already, there is a book by Solvay Pharmaceuticals called Now That I Have CF and it is geared towards adult diagnosed cases. You can ask you clinic to get it for you. I think the medical info is a little bit outdated but it gives you a general idea of what can happen. It also addresses the issues unique to adult onset of the disease and adult diagnosis, like the emotional impact and financial considerations. I cried my way through parts of it but I felt SO much better to have my concerns addressed.
I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
H
hopesiris
Guest
That term is used to. If you don't have it already, there is a book by Solvay Pharmaceuticals called Now That I Have CF and it is geared towards adult diagnosed cases. You can ask you clinic to get it for you. I think the medical info is a little bit outdated but it gives you a general idea of what can happen. It also addresses the issues unique to adult onset of the disease and adult diagnosis, like the emotional impact and financial considerations. I cried my way through parts of it but I felt SO much better to have my concerns addressed.
I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
H
hopesiris
Guest
That term is used to. If you don't have it already, there is a book by Solvay Pharmaceuticals called Now That I Have CF and it is geared towards adult diagnosed cases. You can ask you clinic to get it for you. I think the medical info is a little bit outdated but it gives you a general idea of what can happen. It also addresses the issues unique to adult onset of the disease and adult diagnosis, like the emotional impact and financial considerations. I cried my way through parts of it but I felt SO much better to have my concerns addressed.
<br />
<br />I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
<br />
<br />I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
<br />
<br />
<br />
<br />
<br />I think I know what you mean about labeling. When I walk into a new doctor's office and say I have CF I get all kinds of questions. Forget it when I say I was diagnosed at age 36. Even and ENT who sees CF patients said my sinuses don't look like a typical CFers. I get tired of the comments and wish I didn't have to feel like a bug under a magnifying glass. One doc even asked me if my CF will shorten my lifespan. I was pregnant and newly diagnosed at the time and almost cried. Doctors (and pretty much everyone else) just don't know that CF can present like this. If there was a distinction in the name or even calling it "adult onset" maybe there would be a little less confusion and a little more awareness.
<br />
<br />I haven't tried to purchase life insurance since my diagnosis. What I wonder is if I will grouped into the category of all CFers with the average lifespan of 37 or if the insurance companies realize that the life expectancy for the mutations I have is thought to be 50-70 or even above. That might be where a differentiation is needed.
<br />
<br />
<br />
<div class="FTQUOTE"><begin quote>that the life expectancy for the mutations I have is thought to be 50-70 or even above.</end quote></div>
Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<img src="i/expressions/rose.gif" border="0">
Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<img src="i/expressions/rose.gif" border="0">
<div class="FTQUOTE"><begin quote>that the life expectancy for the mutations I have is thought to be 50-70 or even above.</end quote></div>
Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<img src="i/expressions/rose.gif" border="0">
Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<img src="i/expressions/rose.gif" border="0">
<div class="FTQUOTE"><begin quote>that the life expectancy for the mutations I have is thought to be 50-70 or even above.</end quote></div>
Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<img src="i/expressions/rose.gif" border="0">
Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<img src="i/expressions/rose.gif" border="0">
<div class="FTQUOTE"><begin quote>that the life expectancy for the mutations I have is thought to be 50-70 or even above.</end quote>
Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<img src="i/expressions/rose.gif" border="0">
Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<img src="i/expressions/rose.gif" border="0">
<div class="FTQUOTE"><begin quote>that the life expectancy for the mutations I have is thought to be 50-70 or even above.</end quote>
<br />
<br />Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<br />
<br /><img src="i/expressions/rose.gif" border="0">
<br />
<br />Where did you get that info? I was never given a "life span" (other than the typical 36.5 years median expectancy)
<br />
<br /><img src="i/expressions/rose.gif" border="0">