I am wondering if what used to be considered "mild" or "atypical" is changing based on all of the advances that have occurred. I was frequently told that I had a mild case of CF, yet in the last ten years, I have seen a definite loss in lung function. Once you contract some of those terribly resistant bugs--in my case, PA and MRSA--you seem to be moving downhill like everybody else. I no longer use the term "mild" or consider my case a mild one. I am just a CFer, trying to be proactive and live the longest most quality life I can.
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What is atypical cf?
- Thread starter Lisapatg
- Start date
I am wondering if what used to be considered "mild" or "atypical" is changing based on all of the advances that have occurred. I was frequently told that I had a mild case of CF, yet in the last ten years, I have seen a definite loss in lung function. Once you contract some of those terribly resistant bugs--in my case, PA and MRSA--you seem to be moving downhill like everybody else. I no longer use the term "mild" or consider my case a mild one. I am just a CFer, trying to be proactive and live the longest most quality life I can.
I am wondering if what used to be considered "mild" or "atypical" is changing based on all of the advances that have occurred. I was frequently told that I had a mild case of CF, yet in the last ten years, I have seen a definite loss in lung function. Once you contract some of those terribly resistant bugs--in my case, PA and MRSA--you seem to be moving downhill like everybody else. I no longer use the term "mild" or consider my case a mild one. I am just a CFer, trying to be proactive and live the longest most quality life I can.
I am wondering if what used to be considered "mild" or "atypical" is changing based on all of the advances that have occurred. I was frequently told that I had a mild case of CF, yet in the last ten years, I have seen a definite loss in lung function. Once you contract some of those terribly resistant bugs--in my case, PA and MRSA--you seem to be moving downhill like everybody else. I no longer use the term "mild" or consider my case a mild one. I am just a CFer, trying to be proactive and live the longest most quality life I can.
I am wondering if what used to be considered "mild" or "atypical" is changing based on all of the advances that have occurred. I was frequently told that I had a mild case of CF, yet in the last ten years, I have seen a definite loss in lung function. Once you contract some of those terribly resistant bugs--in my case, PA and MRSA--you seem to be moving downhill like everybody else. I no longer use the term "mild" or consider my case a mild one. I am just a CFer, trying to be proactive and live the longest most quality life I can.
Every person is different.
I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
Every person is different.
I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
Every person is different.
I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
Every person is different.
I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
Every person is different.
<br />
<br />I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
<br />
<br />I think that compared to other CFer's my CF is <i>currently</i> on the 'mild' side. My FEV1 last month was 102%, I'm only culturing staph, I've been on Tobi once, I have sinusitis and polyps, I take pulmozmye daily along with various vitamns. With that said, I am 100% aware that I could go down hill and turn in to 'normal' CFer's (if there ever was such a thing <img src="i/expressions/face-icon-small-smile.gif" border="0">) at any point in time.
*IMO only, which I realize is worth exactly .02*
I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
*IMO only, which I realize is worth exactly .02*
I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
*IMO only, which I realize is worth exactly .02*
I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
*IMO only, which I realize is worth exactly .02*
I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
*IMO only, which I realize is worth exactly .02*
<br />
<br />I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
<br />
<br />You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
<br />
<br />In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
<br />
<br />I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
<br />
<br />OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />I think, along the lines of several posts here, that if ever the terms 'mild' or 'atypical' are to be used, they have to be used in context of 'this is what we see right now.' It drives me nuts when I see people posts stating 'My child/I was dx'ed with cf but the dr said it's mild/atypical (based either on current symptoms or mutation analysis) and we'll probably never see severe/classic disease.'
<br />
<br />You NEVER KNOW what the future will hold and imo, it's shortsighted and potentially very dangerous to make assumptions like that. CF has to be treated with the long-range view that in all of it's forms it is a progressive disease that we have to keep a step ahead of. And it's easier to stay ahead of it when it's not causing huge problems.
<br />
<br />In our personal experience- years ago no one could have foreseen just how sick my dd would be by age 7- what I would give to be able to go back in time and be able to have done more for her. Are we ever paying the price NOW.
<br />
<br />I think the terms Ambry uses classifying the mutations themselves, etc, based on the testing, are more accurate, but even they are given with a disclaimer- that even people w/ identical mutations can present differently.
<br />
<br />OK, off soapbox now. <img src="i/expressions/face-icon-small-wink.gif" border="0">
The way the term atypical/mild is used in most cases makes me cringe. When DS was diagnosed lots of well meaning people would tell us "maybe he has a mild case", so we asked his doctor about it and got the "there's no such thing. CF is a progressive disease. People with CF are born with normal lungs; however, over time eventually the lungs WILL be affected" talk. It was hard to hear at the time, but something we needed to hear so we wouldn't be come complacent.
DH and I don't ever want to look back with regret in terms of something we should've done.
DH and I don't ever want to look back with regret in terms of something we should've done.
The way the term atypical/mild is used in most cases makes me cringe. When DS was diagnosed lots of well meaning people would tell us "maybe he has a mild case", so we asked his doctor about it and got the "there's no such thing. CF is a progressive disease. People with CF are born with normal lungs; however, over time eventually the lungs WILL be affected" talk. It was hard to hear at the time, but something we needed to hear so we wouldn't be come complacent.
DH and I don't ever want to look back with regret in terms of something we should've done.
DH and I don't ever want to look back with regret in terms of something we should've done.
The way the term atypical/mild is used in most cases makes me cringe. When DS was diagnosed lots of well meaning people would tell us "maybe he has a mild case", so we asked his doctor about it and got the "there's no such thing. CF is a progressive disease. People with CF are born with normal lungs; however, over time eventually the lungs WILL be affected" talk. It was hard to hear at the time, but something we needed to hear so we wouldn't be come complacent.
DH and I don't ever want to look back with regret in terms of something we should've done.
DH and I don't ever want to look back with regret in terms of something we should've done.
The way the term atypical/mild is used in most cases makes me cringe. When DS was diagnosed lots of well meaning people would tell us "maybe he has a mild case", so we asked his doctor about it and got the "there's no such thing. CF is a progressive disease. People with CF are born with normal lungs; however, over time eventually the lungs WILL be affected" talk. It was hard to hear at the time, but something we needed to hear so we wouldn't be come complacent.
DH and I don't ever want to look back with regret in terms of something we should've done.
DH and I don't ever want to look back with regret in terms of something we should've done.
The way the term atypical/mild is used in most cases makes me cringe. When DS was diagnosed lots of well meaning people would tell us "maybe he has a mild case", so we asked his doctor about it and got the "there's no such thing. CF is a progressive disease. People with CF are born with normal lungs; however, over time eventually the lungs WILL be affected" talk. It was hard to hear at the time, but something we needed to hear so we wouldn't be come complacent.
<br />
<br />DH and I don't ever want to look back with regret in terms of something we should've done.
<br />
<br />DH and I don't ever want to look back with regret in terms of something we should've done.