I don't post a lot here, but lurk often. As I read the posts I keep seeing that people refer to themselves or their children as having "mild" CF. What exactly is considered "mild" CF? I just thought CF was CF. Some people obviously have more GI probelms or lung problems at first or vice versa, but eventually CF will effect the lungs of everyone who has it right? I know that different mutations are considered more severe by some than others, but there really does not seem to be a whole lot of proof for that theory. In all the stuff I have read, even identical twins with CF, same exact mutations, have totally different symptoms and problems. Some people with double Delta F508 (considered by some to be the worst mutation) do have it really bad and then some people with the mutation live well into their 50's. So I guess my question is what are your thoughts on people saying they only have "mild" CF? And do those of you who consider yourselves or your child to have "mild" Cf do maintenence treamtments, nebs, pulmozyme, ect. or only treat CF when there is an infection? I am really curious to see the responses. Thanks in advance.
What is considered "mild" CF?
- Thread starter rcq925
- Start date
I don't post a lot here, but lurk often. As I read the posts I keep seeing that people refer to themselves or their children as having "mild" CF. What exactly is considered "mild" CF? I just thought CF was CF. Some people obviously have more GI probelms or lung problems at first or vice versa, but eventually CF will effect the lungs of everyone who has it right? I know that different mutations are considered more severe by some than others, but there really does not seem to be a whole lot of proof for that theory. In all the stuff I have read, even identical twins with CF, same exact mutations, have totally different symptoms and problems. Some people with double Delta F508 (considered by some to be the worst mutation) do have it really bad and then some people with the mutation live well into their 50's. So I guess my question is what are your thoughts on people saying they only have "mild" CF? And do those of you who consider yourselves or your child to have "mild" Cf do maintenence treamtments, nebs, pulmozyme, ect. or only treat CF when there is an infection? I am really curious to see the responses. Thanks in advance.
CFHockeyMom
New member
Back when Sean was first diagnosed (1996), the severity of his CF was very important to us. We wanted his Dr. to give some insight as to what we could expect. Well his Dr. told us that she wouldn't attempt to classify Sean's CF until he was at least a year old. So, we waited and the first clinic visit after his first B-day, we asked again about his severity. She told us that because he had cultured PA she was hesitant to classify him as mild CF but thought he was doing really well for moderate CF. We were happy with that and went on with our lives.
Honestly, I haven't thought much about it since then because it doesn't really matter if someone is mild, moderate, or severe. There are plenty of people who post on here that were considered mild CF but their health declined quickly and now they are severe. There are also people on here that consider themselves severe CF but who knows, their condition could vastly improve.
I think in general terms people use mild, moderate or severe to describe their current daily lung/digestive involvement but it's subject to change depending on the day.
Try not to get to wrapped up in the labels because you are right, CF is CF.
Honestly, I haven't thought much about it since then because it doesn't really matter if someone is mild, moderate, or severe. There are plenty of people who post on here that were considered mild CF but their health declined quickly and now they are severe. There are also people on here that consider themselves severe CF but who knows, their condition could vastly improve.
I think in general terms people use mild, moderate or severe to describe their current daily lung/digestive involvement but it's subject to change depending on the day.
Try not to get to wrapped up in the labels because you are right, CF is CF.
CFHockeyMom
New member
Back when Sean was first diagnosed (1996), the severity of his CF was very important to us. We wanted his Dr. to give some insight as to what we could expect. Well his Dr. told us that she wouldn't attempt to classify Sean's CF until he was at least a year old. So, we waited and the first clinic visit after his first B-day, we asked again about his severity. She told us that because he had cultured PA she was hesitant to classify him as mild CF but thought he was doing really well for moderate CF. We were happy with that and went on with our lives.
Honestly, I haven't thought much about it since then because it doesn't really matter if someone is mild, moderate, or severe. There are plenty of people who post on here that were considered mild CF but their health declined quickly and now they are severe. There are also people on here that consider themselves severe CF but who knows, their condition could vastly improve.
I think in general terms people use mild, moderate or severe to describe their current daily lung/digestive involvement but it's subject to change depending on the day.
Try not to get to wrapped up in the labels because you are right, CF is CF.
Honestly, I haven't thought much about it since then because it doesn't really matter if someone is mild, moderate, or severe. There are plenty of people who post on here that were considered mild CF but their health declined quickly and now they are severe. There are also people on here that consider themselves severe CF but who knows, their condition could vastly improve.
I think in general terms people use mild, moderate or severe to describe their current daily lung/digestive involvement but it's subject to change depending on the day.
Try not to get to wrapped up in the labels because you are right, CF is CF.
When DS was diagnosed at birth due to a bowel obstruction people would read up on CF and try to reassure us by saying "maybe it's a mild form of CF". I was heartbroken when his doctor told us there was no such thing. It's a progressive disease and there are lots of variable -- DS was diagnosed at birth and we pretty much started CPT, medications and enzymes after about a week. How agressive is your doctor/cf team? On of our doctors is very very agressive/proactive. Another is more reactive -- questions why he's on antibiotics, tobi, albuterol, atrovent. Wonders why we do CPT when "the lungs aren't affected yet". I'm constantly amazed at the number of people who don't do CPT or stopped doing it 'cuz they didn't need it, their lungs were fine. Or who say their children won't take medications, enzymes or tolerate CPT, so they just don't botter.
So we just focus on keeping DS as healthy as possible in the hope that there will be a cure someday within his lifetime!
So we just focus on keeping DS as healthy as possible in the hope that there will be a cure someday within his lifetime!
When DS was diagnosed at birth due to a bowel obstruction people would read up on CF and try to reassure us by saying "maybe it's a mild form of CF". I was heartbroken when his doctor told us there was no such thing. It's a progressive disease and there are lots of variable -- DS was diagnosed at birth and we pretty much started CPT, medications and enzymes after about a week. How agressive is your doctor/cf team? On of our doctors is very very agressive/proactive. Another is more reactive -- questions why he's on antibiotics, tobi, albuterol, atrovent. Wonders why we do CPT when "the lungs aren't affected yet". I'm constantly amazed at the number of people who don't do CPT or stopped doing it 'cuz they didn't need it, their lungs were fine. Or who say their children won't take medications, enzymes or tolerate CPT, so they just don't botter.
So we just focus on keeping DS as healthy as possible in the hope that there will be a cure someday within his lifetime!
So we just focus on keeping DS as healthy as possible in the hope that there will be a cure someday within his lifetime!
Emily65Roses
New member
I'm glad both answers you got were what they were. I agree. No such thing, it's progressive, it changes. I think it was summed up well when Claudette said...
<blockquote>Quote<br><hr>I think in general terms people use mild, moderate or severe to describe their current daily lung/digestive involvement but it's subject to change depending on the day. <hr></blockquote>
<blockquote>Quote<br><hr>I think in general terms people use mild, moderate or severe to describe their current daily lung/digestive involvement but it's subject to change depending on the day. <hr></blockquote>
Emily65Roses
New member
I'm glad both answers you got were what they were. I agree. No such thing, it's progressive, it changes. I think it was summed up well when Claudette said...
<blockquote>Quote<br><hr>I think in general terms people use mild, moderate or severe to describe their current daily lung/digestive involvement but it's subject to change depending on the day. <hr></blockquote>
<blockquote>Quote<br><hr>I think in general terms people use mild, moderate or severe to describe their current daily lung/digestive involvement but it's subject to change depending on the day. <hr></blockquote>
debs2girls
New member
I wish I knew what was mild, moderate or severe....if what my daughter has already gone through is mild, I hate to see her go through the severe part...she only has lung involvement, at least that is what the dr said, but she doesnt gain weight very well....
debs2girls
New member
I wish I knew what was mild, moderate or severe....if what my daughter has already gone through is mild, I hate to see her go through the severe part...she only has lung involvement, at least that is what the dr said, but she doesnt gain weight very well....
I like to use mild when talking to someone who either has no idea what CF is or has some idea and therefore, thinks my daughter will die tomorrow. It also come in handy when talking to another doctor who knows very little about CF but wonders if it is pertinent to the workup they are doing. For example the dermatologist we saw today for moles.
I agree that CF is CF and you cannot really classify it very well because things can and do chance rapidly. But it do think there is a big difference between someone who spends 1/3 of their life in the hospital, has difficulty with nutrition, needs O2 & IV meds at home, has trouble attending work or school and my kids -- I can easily say compared to that image.... my kids are mild. They have never had IV antibiotics or hospitalization, PFT's are above normal on my daughter, my son does not do any CPT, has only needed oral antibiotics once or twice in his 19 years, my daughter needs oral antibiotics about 3-4 times a year. My daughter has only used Tobi one time for 28 days and has cleared both a MRSA & PA infection and never tested positive again (knock on wood). I'm sure yet should be added there too, but my point is.... I think in laymans terms we can make a comparison of the severity and say mild/moderate/severe...... I think there are some basic differences -- but they can change in an instant or take years to change... but most likely they will change eventually.
I agree that CF is CF and you cannot really classify it very well because things can and do chance rapidly. But it do think there is a big difference between someone who spends 1/3 of their life in the hospital, has difficulty with nutrition, needs O2 & IV meds at home, has trouble attending work or school and my kids -- I can easily say compared to that image.... my kids are mild. They have never had IV antibiotics or hospitalization, PFT's are above normal on my daughter, my son does not do any CPT, has only needed oral antibiotics once or twice in his 19 years, my daughter needs oral antibiotics about 3-4 times a year. My daughter has only used Tobi one time for 28 days and has cleared both a MRSA & PA infection and never tested positive again (knock on wood). I'm sure yet should be added there too, but my point is.... I think in laymans terms we can make a comparison of the severity and say mild/moderate/severe...... I think there are some basic differences -- but they can change in an instant or take years to change... but most likely they will change eventually.
I like to use mild when talking to someone who either has no idea what CF is or has some idea and therefore, thinks my daughter will die tomorrow. It also come in handy when talking to another doctor who knows very little about CF but wonders if it is pertinent to the workup they are doing. For example the dermatologist we saw today for moles.
I agree that CF is CF and you cannot really classify it very well because things can and do chance rapidly. But it do think there is a big difference between someone who spends 1/3 of their life in the hospital, has difficulty with nutrition, needs O2 & IV meds at home, has trouble attending work or school and my kids -- I can easily say compared to that image.... my kids are mild. They have never had IV antibiotics or hospitalization, PFT's are above normal on my daughter, my son does not do any CPT, has only needed oral antibiotics once or twice in his 19 years, my daughter needs oral antibiotics about 3-4 times a year. My daughter has only used Tobi one time for 28 days and has cleared both a MRSA & PA infection and never tested positive again (knock on wood). I'm sure yet should be added there too, but my point is.... I think in laymans terms we can make a comparison of the severity and say mild/moderate/severe...... I think there are some basic differences -- but they can change in an instant or take years to change... but most likely they will change eventually.
I agree that CF is CF and you cannot really classify it very well because things can and do chance rapidly. But it do think there is a big difference between someone who spends 1/3 of their life in the hospital, has difficulty with nutrition, needs O2 & IV meds at home, has trouble attending work or school and my kids -- I can easily say compared to that image.... my kids are mild. They have never had IV antibiotics or hospitalization, PFT's are above normal on my daughter, my son does not do any CPT, has only needed oral antibiotics once or twice in his 19 years, my daughter needs oral antibiotics about 3-4 times a year. My daughter has only used Tobi one time for 28 days and has cleared both a MRSA & PA infection and never tested positive again (knock on wood). I'm sure yet should be added there too, but my point is.... I think in laymans terms we can make a comparison of the severity and say mild/moderate/severe...... I think there are some basic differences -- but they can change in an instant or take years to change... but most likely they will change eventually.
debs2girls
New member
Alyssa, if I use your childrens excellent health to gage my little girl then she has severe c/f...but I really dont know, then again, she hasnt ever been in the hospital for iv antibiotics...she has had pnuemonia 17 times (I think she is working on #18) with moderate lung scarring, numerous sinus infections that are very hard to clear up, acid reflux, cold like symptoms all the time, asthma and fft.
How would you describe her....mild, moderate or severe? I just want your opinions.
How would you describe her....mild, moderate or severe? I just want your opinions.
debs2girls
New member
Alyssa, if I use your childrens excellent health to gage my little girl then she has severe c/f...but I really dont know, then again, she hasnt ever been in the hospital for iv antibiotics...she has had pnuemonia 17 times (I think she is working on #18) with moderate lung scarring, numerous sinus infections that are very hard to clear up, acid reflux, cold like symptoms all the time, asthma and fft.
How would you describe her....mild, moderate or severe? I just want your opinions.
How would you describe her....mild, moderate or severe? I just want your opinions.
Gee Debbie... I feel so put on the spot 
I hardly feel qualified to judge someone else's kids ! But since you directly asked.... I guess (comparing my two examples of mild vs severe to your daughter) I'd have to say if you wanted to call it mild you easily could, moderate at the most, but not severe.
I think we all tend to view things differently when it is our life, our reality. Things that I deal with on a daily bases (not only with CF but with my son's developmental delay/autistic spectrum disorder/OCD tendencies -- my daughters other health issues) and homeschooling for 8 years (now helping with college courses) seem quite normal and not so bad to me but my friends say "I don't know how you do it" I look at other peoples lives and think "I don't know how they do it!" So I guess my point is we all get used to how things are, except them and do the best we can.
It's all a matter of the glass being half full right?
I hardly feel qualified to judge someone else's kids ! But since you directly asked.... I guess (comparing my two examples of mild vs severe to your daughter) I'd have to say if you wanted to call it mild you easily could, moderate at the most, but not severe.
I think we all tend to view things differently when it is our life, our reality. Things that I deal with on a daily bases (not only with CF but with my son's developmental delay/autistic spectrum disorder/OCD tendencies -- my daughters other health issues) and homeschooling for 8 years (now helping with college courses) seem quite normal and not so bad to me but my friends say "I don't know how you do it" I look at other peoples lives and think "I don't know how they do it!" So I guess my point is we all get used to how things are, except them and do the best we can.
It's all a matter of the glass being half full right?
Gee Debbie... I feel so put on the spot
I hardly feel qualified to judge someone else's kids ! But since you directly asked.... I guess (comparing my two examples of mild vs severe to your daughter) I'd have to say if you wanted to call it mild you easily could, moderate at the most, but not severe.
I think we all tend to view things differently when it is our life, our reality. Things that I deal with on a daily bases (not only with CF but with my son's developmental delay/autistic spectrum disorder/OCD tendencies -- my daughters other health issues) and homeschooling for 8 years (now helping with college courses) seem quite normal and not so bad to me but my friends say "I don't know how you do it" I look at other peoples lives and think "I don't know how they do it!" So I guess my point is we all get used to how things are, except them and do the best we can.
It's all a matter of the glass being half full right?
I hardly feel qualified to judge someone else's kids ! But since you directly asked.... I guess (comparing my two examples of mild vs severe to your daughter) I'd have to say if you wanted to call it mild you easily could, moderate at the most, but not severe.
I think we all tend to view things differently when it is our life, our reality. Things that I deal with on a daily bases (not only with CF but with my son's developmental delay/autistic spectrum disorder/OCD tendencies -- my daughters other health issues) and homeschooling for 8 years (now helping with college courses) seem quite normal and not so bad to me but my friends say "I don't know how you do it" I look at other peoples lives and think "I don't know how they do it!" So I guess my point is we all get used to how things are, except them and do the best we can.
It's all a matter of the glass being half full right?
debs2girls
New member
Alyssa, I am sorry you felt put on the spot...I know I started my post out address to you, but I was really asking everyone their opinion.....again I am sorry...<img src="i/expressions/puppy_eyes.gif" border="0"><img src="i/expressions/rose.gif" border="0"><img src="i/expressions/puppy_eyes.gif" border="0">
debs2girls
New member
Alyssa, I am sorry you felt put on the spot...I know I started my post out address to you, but I was really asking everyone their opinion.....again I am sorry...<img src="i/expressions/puppy_eyes.gif" border="0"><img src="i/expressions/rose.gif" border="0"><img src="i/expressions/puppy_eyes.gif" border="0">