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.
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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.
Depending on your mutation(s), your environment, your care, how early you were diagnosed, your overall gene quality and family history, how well you comply with your CF medications and treatments, your diet, your exercise, your mental toughness, family/spouse/friend support, and some luck thrown in for good measure...I'd say those are the factors that influence CF severeity in general.
Depending on your mutation(s), your environment, your care, how early you were diagnosed, your overall gene quality and family history, how well you comply with your CF medications and treatments, your diet, your exercise, your mental toughness, family/spouse/friend support, and some luck thrown in for good measure...I'd say those are the factors that influence CF severeity in general.
I was told I had a mild case when I was little but now that I look back I would say that I had a mild to moderate case. I had to always do the therapies. I think a person with little lung involvement with cf who has ninety percent lung function would benefit from therapy. Look at lisa Bently the triathlete. From what I read she does her therapy. She is very smart in my eyes as if she can win races against healthy people. I am sure should could skip her therapies. Would she be able to maximize her health and compete with others if she did not do her treatments? She puts her all into her health and that is how she will always have a mild case in my opinion.
The sad part is when folks with cF would say I never did treatments etc.. when they were growing up because they had mild cf their CF quickly advanced when they got older. Not all CF's were like that but I think if your case is mild then keep it that way by doing all you can do.
Some patients could have a mild case when in fact if they did not do their treatments they would be very sick. I think a persons CF depends on a whole lot of factors. Enviroment, foods they eat, rest, stress levels (how they see themselves, how their families relate to them and of course marriage issues) financial matters, genetic factors other than cf like how their other organs are.
Risa
The sad part is when folks with cF would say I never did treatments etc.. when they were growing up because they had mild cf their CF quickly advanced when they got older. Not all CF's were like that but I think if your case is mild then keep it that way by doing all you can do.
Some patients could have a mild case when in fact if they did not do their treatments they would be very sick. I think a persons CF depends on a whole lot of factors. Enviroment, foods they eat, rest, stress levels (how they see themselves, how their families relate to them and of course marriage issues) financial matters, genetic factors other than cf like how their other organs are.
Risa
I was told I had a mild case when I was little but now that I look back I would say that I had a mild to moderate case. I had to always do the therapies. I think a person with little lung involvement with cf who has ninety percent lung function would benefit from therapy. Look at lisa Bently the triathlete. From what I read she does her therapy. She is very smart in my eyes as if she can win races against healthy people. I am sure should could skip her therapies. Would she be able to maximize her health and compete with others if she did not do her treatments? She puts her all into her health and that is how she will always have a mild case in my opinion.
The sad part is when folks with cF would say I never did treatments etc.. when they were growing up because they had mild cf their CF quickly advanced when they got older. Not all CF's were like that but I think if your case is mild then keep it that way by doing all you can do.
Some patients could have a mild case when in fact if they did not do their treatments they would be very sick. I think a persons CF depends on a whole lot of factors. Enviroment, foods they eat, rest, stress levels (how they see themselves, how their families relate to them and of course marriage issues) financial matters, genetic factors other than cf like how their other organs are.
Risa
The sad part is when folks with cF would say I never did treatments etc.. when they were growing up because they had mild cf their CF quickly advanced when they got older. Not all CF's were like that but I think if your case is mild then keep it that way by doing all you can do.
Some patients could have a mild case when in fact if they did not do their treatments they would be very sick. I think a persons CF depends on a whole lot of factors. Enviroment, foods they eat, rest, stress levels (how they see themselves, how their families relate to them and of course marriage issues) financial matters, genetic factors other than cf like how their other organs are.
Risa
About 10-12 years ago I had a genetic counselor analyse my CF gene, my mutation I suppose, (however they do it) and she could determine from that what "type" of CF I had. She said it's clear from the data they look at whether you have severe, moderate or mild. I think I remember her saying there were a few different types of each that would explain if you have more GI or lung problems or the combination, etc. It was interesting because I had always been told growing up that my lungs looked so good and I definitely had a 'mild' case, but until this genetic counselor gave me the scientific facts (I wrote it all down), that's when I really grasped the reason why I always did so well compared to some others. Of course, since CF is progressive, it will get worse and 'mild' doesn't mean you're out of the woods. I think it is more an explanation to why one might do better overall and live into their 40s or 50s and someone else might not make it to their 30s.
About 10-12 years ago I had a genetic counselor analyse my CF gene, my mutation I suppose, (however they do it) and she could determine from that what "type" of CF I had. She said it's clear from the data they look at whether you have severe, moderate or mild. I think I remember her saying there were a few different types of each that would explain if you have more GI or lung problems or the combination, etc. It was interesting because I had always been told growing up that my lungs looked so good and I definitely had a 'mild' case, but until this genetic counselor gave me the scientific facts (I wrote it all down), that's when I really grasped the reason why I always did so well compared to some others. Of course, since CF is progressive, it will get worse and 'mild' doesn't mean you're out of the woods. I think it is more an explanation to why one might do better overall and live into their 40s or 50s and someone else might not make it to their 30s.
THere are a couple ways to define it is the problem I think. I would say someone who doesn't have much problems, lives into their late 40's, early 50's has mild CF. People like Ry I'd consider moderate, younger than Ry, severe.
But you can define it from where you are right now, which is where I think a lot of parents of children with Cf are. Most children have 'mild' CF. They don't have a lot of problems. But mild eventually turns to moderate, then to severe.
two different ways of looking at it.
But you can define it from where you are right now, which is where I think a lot of parents of children with Cf are. Most children have 'mild' CF. They don't have a lot of problems. But mild eventually turns to moderate, then to severe.
two different ways of looking at it.
THere are a couple ways to define it is the problem I think. I would say someone who doesn't have much problems, lives into their late 40's, early 50's has mild CF. People like Ry I'd consider moderate, younger than Ry, severe.
But you can define it from where you are right now, which is where I think a lot of parents of children with Cf are. Most children have 'mild' CF. They don't have a lot of problems. But mild eventually turns to moderate, then to severe.
two different ways of looking at it.
But you can define it from where you are right now, which is where I think a lot of parents of children with Cf are. Most children have 'mild' CF. They don't have a lot of problems. But mild eventually turns to moderate, then to severe.
two different ways of looking at it.
Emily65Roses
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Some people live into their sixties and seventies.<hr></blockquote>
Yes but it's not common (not saying impossible, no one needs to jump down my throat), and everyone needs to be aware of that.
Yes but it's not common (not saying impossible, no one needs to jump down my throat), and everyone needs to be aware of that.
Emily65Roses
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Some people live into their sixties and seventies.<hr></blockquote>
Yes but it's not common (not saying impossible, no one needs to jump down my throat), and everyone needs to be aware of that.
Yes but it's not common (not saying impossible, no one needs to jump down my throat), and everyone needs to be aware of that.
<img src="i/expressions/heart.gif" border="0"> Hi...37(38 in 3 months)yr old female with CF, diagnosed at the age of 3yrs young. Ever since I can remember every docotor that I see whether it be a family doctor or a CF doctor has always told me that I have a "mild" case of CF. I thought to myself..."What DOES that mean exactly?" Well I think I know...To have a mild case of CF as like me I think it means this....Ever since I was 9...I was going to CF Camp, I stopped taking my enzymes ( back then I was taking 100 per meal and with snacks). I stopped taking them because I thought I was old enough to make that decision. I stopped taking them for yrs and yrs and yrs. I also stopped any physio that I was doing cause it hurt too much, whether the physio therapist wasn't doin it right who knows....I just stopped. Since then I have NOT done any physio or anything in relation to it. Up until about 5 yrs ago I wasn't taking any enzymes (unless I felt I REALLY needed to). I have found that as I got older the CF symptoms got more noticeable. I think I got off topic a lil. What I'm trying to say is...I don't do what CFers are supposed to do and I don't take my enzymes like I'm supposed to...Well now I take more like I should, my dotors say that my lungs are healthier than a person without CF. I could like my life as a "Normal" person if I wanted. Ihave noticed tho that I get older this are slowly shutin down. Now almost 38 I do use my inhalers more often, my motabolizim isn't so fast any more, I get tired a lil faster, just stuff like that But I am still considered to have "Mild" CF. Unlike my brother (28 in 2 weeks) who fell ill last yr and is now on a lung transplant list has less than 2 yrs to live if he doens't get one soon. I hope this helps....
<img src="i/expressions/heart.gif" border="0"> Hi...37(38 in 3 months)yr old female with CF, diagnosed at the age of 3yrs young. Ever since I can remember every docotor that I see whether it be a family doctor or a CF doctor has always told me that I have a "mild" case of CF. I thought to myself..."What DOES that mean exactly?" Well I think I know...To have a mild case of CF as like me I think it means this....Ever since I was 9...I was going to CF Camp, I stopped taking my enzymes ( back then I was taking 100 per meal and with snacks). I stopped taking them because I thought I was old enough to make that decision. I stopped taking them for yrs and yrs and yrs. I also stopped any physio that I was doing cause it hurt too much, whether the physio therapist wasn't doin it right who knows....I just stopped. Since then I have NOT done any physio or anything in relation to it. Up until about 5 yrs ago I wasn't taking any enzymes (unless I felt I REALLY needed to). I have found that as I got older the CF symptoms got more noticeable. I think I got off topic a lil. What I'm trying to say is...I don't do what CFers are supposed to do and I don't take my enzymes like I'm supposed to...Well now I take more like I should, my dotors say that my lungs are healthier than a person without CF. I could like my life as a "Normal" person if I wanted. Ihave noticed tho that I get older this are slowly shutin down. Now almost 38 I do use my inhalers more often, my motabolizim isn't so fast any more, I get tired a lil faster, just stuff like that But I am still considered to have "Mild" CF. Unlike my brother (28 in 2 weeks) who fell ill last yr and is now on a lung transplant list has less than 2 yrs to live if he doens't get one soon. I hope this helps....
smoothdave
New member
some one said that the top this is a very good question because every one could possibly have a different answer which it definatly true! i got dx about a 1.5-2 years ago now and i was supposed to be a "mild case" and ot be honest i have been doing quite well, and i obviously hope that dose not change. so thats me a "mild case"
smoothdave
New member
some one said that the top this is a very good question because every one could possibly have a different answer which it definatly true! i got dx about a 1.5-2 years ago now and i was supposed to be a "mild case" and ot be honest i have been doing quite well, and i obviously hope that dose not change. so thats me a "mild case"