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Is Atypical CF really all that uncommon?
- Thread starter Juliet
- Start date
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>
Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote></div>
We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote></div>
We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>
Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote></div>
We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote></div>
We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>
Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote></div>
We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote></div>
We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>
Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote>
We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote>
We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>
<br />
<br />
<br />Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote>
<br />
<br />We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
<br />
<br />Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
<br />
<br />
<br />Did you know that one is not diagnosed by any cf center with merely two cf genetic mutations? The CFF seems to be skirting around this because they don't talk about it anywhere.</end quote>
<br />
<br />We had several discussions with our CFF doctor about labeling our son with CF based on mutations alone. He said that when he discussed his case with other doctors (he never mentioned the CFF) that there seemed to be a divide in the thinking - some doctors said "no symptoms = no diagnosis" while others doctors said "this is a no brainer.... two CF genes = CF diagnosis" So it may boil down to personal opinion of the CF clinic and/or doctor.
<br />
<br />Our doctor seemed to want to respect our wishes in the beginning to keep the diagnosis off because of health/life insurance eligibility issues. Within a year or so it didn't seem to matter anymore as time went by and he was seen/followed by the clinic every three months and occasionally saw what might be considered a symptom or two, we went ahead with the diagnosis.
Agreed CF is CF. Was hard to hear at first when DS was first diagnosed that there was no such thing as a mild form of CF, but we needed to hear it, so we could move on and be proactive.
Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
Agreed CF is CF. Was hard to hear at first when DS was first diagnosed that there was no such thing as a mild form of CF, but we needed to hear it, so we could move on and be proactive.
Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
Agreed CF is CF. Was hard to hear at first when DS was first diagnosed that there was no such thing as a mild form of CF, but we needed to hear it, so we could move on and be proactive.
Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
Agreed CF is CF. Was hard to hear at first when DS was first diagnosed that there was no such thing as a mild form of CF, but we needed to hear it, so we could move on and be proactive.
Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
Agreed CF is CF. Was hard to hear at first when DS was first diagnosed that there was no such thing as a mild form of CF, but we needed to hear it, so we could move on and be proactive.
<br />
<br />Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
<br />
<br />Where I live, the sweat test is still considered the "gold standard". Last winter I read an article about a local child with asthma who needed digestive enzymes and feeding tube because of pancreatic insufficiency and just cringed. We have an accreditted CF clinic; however, when my husband's cousin was planning to have another child, she couldn't get a clear response on where or how to get carrier testing. Even DS's own local cf doctor sent me an email saying she should think "Long and Hard about why she wanted testing, as it was probably not covered under insurance".
lightNlife
New member
I want to second what NoExcuses said. "CF is CF. "
What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
And don't get me started on symptomatic carriers...
What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
And don't get me started on symptomatic carriers...
lightNlife
New member
I want to second what NoExcuses said. "CF is CF. "
What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
And don't get me started on symptomatic carriers...
What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
And don't get me started on symptomatic carriers...
lightNlife
New member
I want to second what NoExcuses said. "CF is CF. "
What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
And don't get me started on symptomatic carriers...
What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
And don't get me started on symptomatic carriers...
lightNlife
New member
I want to second what NoExcuses said. "CF is CF. "
What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
And don't get me started on symptomatic carriers...
What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
And don't get me started on symptomatic carriers...
lightNlife
New member
I want to second what NoExcuses said. "CF is CF. "
<br />
<br />What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
<br />
<br />"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
<br />
<br />And don't get me started on symptomatic carriers...
<br />
<br />What makes you a CFer is your GENES, not your symptoms. Unfortunately, there are still far too many people in the medical field that think the symptoms should be the basis for a diagnosis.
<br />
<br />"Atypical CF" is a misnomer and is quite an ignorant phrase to use, especially in a day and age when we finally know about the CFTR protein and the 7th chromosome.
<br />
<br />And don't get me started on symptomatic carriers...