TX AS IF...

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chrissyd

New member
I don't think any less of anyone. It is strange to me; mainly because my doctor said that now a days you can not get a positive CF diagnosis with out a positive sweat test *and* genetic testing...but thats at the NIH

But stranger things have happened! <img src="i/expressions/face-icon-small-wink.gif" border="0">

This site has had a history of "posers" or people pretending to be sick...so some people are really sensitive about it.
CF is CF to me...atypical symptoms or no...life is too short to split hairs.

So to answer your question, nope it doesn't bother me at all.


<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I don't think any less of anyone. It is strange to me; mainly because my doctor said that now a days you can not get a positive CF diagnosis with out a positive sweat test *and* genetic testing...but thats at the NIH

But stranger things have happened! <img src="i/expressions/face-icon-small-wink.gif" border="0">

This site has had a history of "posers" or people pretending to be sick...so some people are really sensitive about it.
CF is CF to me...atypical symptoms or no...life is too short to split hairs.

So to answer your question, nope it doesn't bother me at all.


<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I don't think any less of anyone. It is strange to me; mainly because my doctor said that now a days you can not get a positive CF diagnosis with out a positive sweat test *and* genetic testing...but thats at the NIH

But stranger things have happened! <img src="i/expressions/face-icon-small-wink.gif" border="0">

This site has had a history of "posers" or people pretending to be sick...so some people are really sensitive about it.
CF is CF to me...atypical symptoms or no...life is too short to split hairs.

So to answer your question, nope it doesn't bother me at all.


<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I don't think any less of anyone. It is strange to me; mainly because my doctor said that now a days you can not get a positive CF diagnosis with out a positive sweat test *and* genetic testing...but thats at the NIH

But stranger things have happened! <img src="i/expressions/face-icon-small-wink.gif" border="0">

This site has had a history of "posers" or people pretending to be sick...so some people are really sensitive about it.
CF is CF to me...atypical symptoms or no...life is too short to split hairs.

So to answer your question, nope it doesn't bother me at all.


<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
I don't think any less of anyone. It is strange to me; mainly because my doctor said that now a days you can not get a positive CF diagnosis with out a positive sweat test *and* genetic testing...but thats at the NIH
<br />
<br />But stranger things have happened! <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />This site has had a history of "posers" or people pretending to be sick...so some people are really sensitive about it.
<br />CF is CF to me...atypical symptoms or no...life is too short to split hairs.
<br />
<br />So to answer your question, nope it doesn't bother me at all.
<br />
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 
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Buckeye

New member
No, doesn't bother me because my son is one of the weird ones with no mutations found yet. He is diagnosed by multiple very high sweat tests, failure to thrive and respiratory issues/x-rays consistent with CF. And I also had an older sister die at a very young age from Bronchiolitis and she also had severe failure to thrive so they now think she had CF (she was born in the 1950's so no genetics to go by, just old medical reports).Chrissy, current philosphy is that you can be diagnosed with genetics <b>or</b> two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines.Valerie, I think you might have just mis-interpreted the other thread. As stated above, the posters were taking issue with the non-genetic poster because she claims to have cured herself of CF when in fact she has no proof that she ever had CF. It makes light of people's real struggles with CF by suggesting that if they just tried harder they could do the same thing (except these people actually do have CF).
 
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Buckeye

New member
No, doesn't bother me because my son is one of the weird ones with no mutations found yet. He is diagnosed by multiple very high sweat tests, failure to thrive and respiratory issues/x-rays consistent with CF. And I also had an older sister die at a very young age from Bronchiolitis and she also had severe failure to thrive so they now think she had CF (she was born in the 1950's so no genetics to go by, just old medical reports).Chrissy, current philosphy is that you can be diagnosed with genetics <b>or</b> two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines.Valerie, I think you might have just mis-interpreted the other thread. As stated above, the posters were taking issue with the non-genetic poster because she claims to have cured herself of CF when in fact she has no proof that she ever had CF. It makes light of people's real struggles with CF by suggesting that if they just tried harder they could do the same thing (except these people actually do have CF).
 
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Buckeye

New member
No, doesn't bother me because my son is one of the weird ones with no mutations found yet. He is diagnosed by multiple very high sweat tests, failure to thrive and respiratory issues/x-rays consistent with CF. And I also had an older sister die at a very young age from Bronchiolitis and she also had severe failure to thrive so they now think she had CF (she was born in the 1950's so no genetics to go by, just old medical reports).Chrissy, current philosphy is that you can be diagnosed with genetics <b>or</b> two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines.Valerie, I think you might have just mis-interpreted the other thread. As stated above, the posters were taking issue with the non-genetic poster because she claims to have cured herself of CF when in fact she has no proof that she ever had CF. It makes light of people's real struggles with CF by suggesting that if they just tried harder they could do the same thing (except these people actually do have CF).
 
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Buckeye

New member
No, doesn't bother me because my son is one of the weird ones with no mutations found yet. He is diagnosed by multiple very high sweat tests, failure to thrive and respiratory issues/x-rays consistent with CF. And I also had an older sister die at a very young age from Bronchiolitis and she also had severe failure to thrive so they now think she had CF (she was born in the 1950's so no genetics to go by, just old medical reports).Chrissy, current philosphy is that you can be diagnosed with genetics <b>or</b> two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines.Valerie, I think you might have just mis-interpreted the other thread. As stated above, the posters were taking issue with the non-genetic poster because she claims to have cured herself of CF when in fact she has no proof that she ever had CF. It makes light of people's real struggles with CF by suggesting that if they just tried harder they could do the same thing (except these people actually do have CF).
 
B

Buckeye

New member
No, doesn't bother me because my son is one of the weird ones with no mutations found yet. He is diagnosed by multiple very high sweat tests, failure to thrive and respiratory issues/x-rays consistent with CF. And I also had an older sister die at a very young age from Bronchiolitis and she also had severe failure to thrive so they now think she had CF (she was born in the 1950's so no genetics to go by, just old medical reports).<p>Chrissy, current philosphy is that you can be diagnosed with genetics <b>or</b> two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines.Valerie, I think you might have just mis-interpreted the other thread. As stated above, the posters were taking issue with the non-genetic poster because she claims to have cured herself of CF when in fact she has no proof that she ever had CF. It makes light of people's real struggles with CF by suggesting that if they just tried harder they could do the same thing (except these people actually do have CF).
 
C

chrissyd

New member
"Chrissy, current philosphy is that you can be diagnosed with genetics or two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines."

They probably do. Also those could be guidelines for their study.
<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
"Chrissy, current philosphy is that you can be diagnosed with genetics or two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines."

They probably do. Also those could be guidelines for their study.
<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
"Chrissy, current philosphy is that you can be diagnosed with genetics or two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines."

They probably do. Also those could be guidelines for their study.
<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
"Chrissy, current philosphy is that you can be diagnosed with genetics or two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines."

They probably do. Also those could be guidelines for their study.
<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
"Chrissy, current philosphy is that you can be diagnosed with genetics or two clearly positive sweat tests plus at least one or two other signs of CF, although the NIH may have stricted guidelines."
<br />
<br />They probably do. Also those could be guidelines for their study.
<br /><img src="i/expressions/rose.gif" border="0">
 
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NYCLawGirl

New member
Testing is always kind of a weird topic on these forums. I can recall reading numerous threads about sweat testing, genetic testing, atypical vs. confirmed diagnosis, and "mild" vs. "classic" symptoms. For some reason these types of discussions always trigger some personal sensitivities. On the one hand it's easy to see why people have strong reactions to CF - it's such a life-altering disease. On the other hand, it's terrible to see how divisive this issue can be at times when eventually, push comes to shove, we're all in the same boat.

I think your questions as to the other thread have been answered. That was definitely a different situation. Many of us "older" CFers were diagnosed using sweat tests rather than genetic panels anyway. My sweat test was off the charts (well over a hundred) but for years they could only identify my deltaF508 mutation. It was only after I went to college and had the deletion panel run (even more mutations beyond the full panel) that they discovered my second mutation, which is actually a complete deletion of the CFTR gene. But I was never considered "atypical" and there was never any question as to my diagnosis b/c of the sweat test.

Your son isn't alone. They keep identifying new mutations - I can hardly imagine we've hit the final tally yet.
 
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NYCLawGirl

New member
Testing is always kind of a weird topic on these forums. I can recall reading numerous threads about sweat testing, genetic testing, atypical vs. confirmed diagnosis, and "mild" vs. "classic" symptoms. For some reason these types of discussions always trigger some personal sensitivities. On the one hand it's easy to see why people have strong reactions to CF - it's such a life-altering disease. On the other hand, it's terrible to see how divisive this issue can be at times when eventually, push comes to shove, we're all in the same boat.

I think your questions as to the other thread have been answered. That was definitely a different situation. Many of us "older" CFers were diagnosed using sweat tests rather than genetic panels anyway. My sweat test was off the charts (well over a hundred) but for years they could only identify my deltaF508 mutation. It was only after I went to college and had the deletion panel run (even more mutations beyond the full panel) that they discovered my second mutation, which is actually a complete deletion of the CFTR gene. But I was never considered "atypical" and there was never any question as to my diagnosis b/c of the sweat test.

Your son isn't alone. They keep identifying new mutations - I can hardly imagine we've hit the final tally yet.
 
N

NYCLawGirl

New member
Testing is always kind of a weird topic on these forums. I can recall reading numerous threads about sweat testing, genetic testing, atypical vs. confirmed diagnosis, and "mild" vs. "classic" symptoms. For some reason these types of discussions always trigger some personal sensitivities. On the one hand it's easy to see why people have strong reactions to CF - it's such a life-altering disease. On the other hand, it's terrible to see how divisive this issue can be at times when eventually, push comes to shove, we're all in the same boat.

I think your questions as to the other thread have been answered. That was definitely a different situation. Many of us "older" CFers were diagnosed using sweat tests rather than genetic panels anyway. My sweat test was off the charts (well over a hundred) but for years they could only identify my deltaF508 mutation. It was only after I went to college and had the deletion panel run (even more mutations beyond the full panel) that they discovered my second mutation, which is actually a complete deletion of the CFTR gene. But I was never considered "atypical" and there was never any question as to my diagnosis b/c of the sweat test.

Your son isn't alone. They keep identifying new mutations - I can hardly imagine we've hit the final tally yet.
 
N

NYCLawGirl

New member
Testing is always kind of a weird topic on these forums. I can recall reading numerous threads about sweat testing, genetic testing, atypical vs. confirmed diagnosis, and "mild" vs. "classic" symptoms. For some reason these types of discussions always trigger some personal sensitivities. On the one hand it's easy to see why people have strong reactions to CF - it's such a life-altering disease. On the other hand, it's terrible to see how divisive this issue can be at times when eventually, push comes to shove, we're all in the same boat.

I think your questions as to the other thread have been answered. That was definitely a different situation. Many of us "older" CFers were diagnosed using sweat tests rather than genetic panels anyway. My sweat test was off the charts (well over a hundred) but for years they could only identify my deltaF508 mutation. It was only after I went to college and had the deletion panel run (even more mutations beyond the full panel) that they discovered my second mutation, which is actually a complete deletion of the CFTR gene. But I was never considered "atypical" and there was never any question as to my diagnosis b/c of the sweat test.

Your son isn't alone. They keep identifying new mutations - I can hardly imagine we've hit the final tally yet.
 
N

NYCLawGirl

New member
Testing is always kind of a weird topic on these forums. I can recall reading numerous threads about sweat testing, genetic testing, atypical vs. confirmed diagnosis, and "mild" vs. "classic" symptoms. For some reason these types of discussions always trigger some personal sensitivities. On the one hand it's easy to see why people have strong reactions to CF - it's such a life-altering disease. On the other hand, it's terrible to see how divisive this issue can be at times when eventually, push comes to shove, we're all in the same boat.
<br />
<br />I think your questions as to the other thread have been answered. That was definitely a different situation. Many of us "older" CFers were diagnosed using sweat tests rather than genetic panels anyway. My sweat test was off the charts (well over a hundred) but for years they could only identify my deltaF508 mutation. It was only after I went to college and had the deletion panel run (even more mutations beyond the full panel) that they discovered my second mutation, which is actually a complete deletion of the CFTR gene. But I was never considered "atypical" and there was never any question as to my diagnosis b/c of the sweat test.
<br />
<br />Your son isn't alone. They keep identifying new mutations - I can hardly imagine we've hit the final tally yet.
 
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