Mild and Rare Cases...where are you?

[lightNlife]

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.

 

[lightNlife]

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.

 

[lightNlife]

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.

 

[lightNlife]

I really wish more people (particularly parents of young CFers) would understand that although there are mild stages of CF, there's really no true mild case of CF.

When you tell yourself that you're mild, or if you treat your CF as though it's mild, you're doing yourself a huge disservice. By not taking the disease seriously and being aggressive with treatments, etc. you could really be harming yourself and potentially impacting your longevity in a negative way.

It's true that not everyone needs the same treatments at the same stages in life. For my earliest years I only had digestive issues. I don't think it's prudent to call a life-shortening, incurable disease "Mild."

Be thankful that you are in a mild stage. You're more likely to enjoy it for longer if you take it seriously.

 

[JustDucky]

I would say that my CF component in my health is not as severe as others who are my age and have CF, I was diagnosed at 33 with atypical CF, I am 35 now. Since my diagnosis, I have been on top of my treatments, enzymes, blood sugars etc....I do wind up in the hospital for IV's to treat cepacia. It is hard to tell what degree of obstruction there is in my lungs from CF versus the restrictive component that I have from a failed diaphragm (I live on a vent because of this...definitely makes me more susceptible to bacteria). My Xrays aren't horrible, neither are my CT scans, I do have scarring from repeated infections. I think that if I didn't live on a vent, I might have been diagnosed even later in life. Prior to the vent, I was diagnosed with asthma in my 20's after years of symptoms and hospitalized a few times a year from exacerbations and infections. I just thought that I had a wicked case of asthma. CF was never considered until I grew out cepacia, then they looked at the whole picture regarding digestive issues (lost a tremendous amount of weight in a very short time, I was actually very overweight at one time, now of normal weight, sinus problems etc....I think that my FEV1 in my 20's was 80's (before my diaphragm bit the dust) and had an obstructive pattern.
I am amazed at how many adults are now being newly diagnosed. I did feel like I was suddenly tossed into the CF ring, but am relieved that there is finally an explaination of all of my symptoms that I experienced earlier on in my life. Now I am getting the right treatment and am feeling better because of it.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

I would say that my CF component in my health is not as severe as others who are my age and have CF, I was diagnosed at 33 with atypical CF, I am 35 now. Since my diagnosis, I have been on top of my treatments, enzymes, blood sugars etc....I do wind up in the hospital for IV's to treat cepacia. It is hard to tell what degree of obstruction there is in my lungs from CF versus the restrictive component that I have from a failed diaphragm (I live on a vent because of this...definitely makes me more susceptible to bacteria). My Xrays aren't horrible, neither are my CT scans, I do have scarring from repeated infections. I think that if I didn't live on a vent, I might have been diagnosed even later in life. Prior to the vent, I was diagnosed with asthma in my 20's after years of symptoms and hospitalized a few times a year from exacerbations and infections. I just thought that I had a wicked case of asthma. CF was never considered until I grew out cepacia, then they looked at the whole picture regarding digestive issues (lost a tremendous amount of weight in a very short time, I was actually very overweight at one time, now of normal weight, sinus problems etc....I think that my FEV1 in my 20's was 80's (before my diaphragm bit the dust) and had an obstructive pattern.
I am amazed at how many adults are now being newly diagnosed. I did feel like I was suddenly tossed into the CF ring, but am relieved that there is finally an explaination of all of my symptoms that I experienced earlier on in my life. Now I am getting the right treatment and am feeling better because of it.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

I would say that my CF component in my health is not as severe as others who are my age and have CF, I was diagnosed at 33 with atypical CF, I am 35 now. Since my diagnosis, I have been on top of my treatments, enzymes, blood sugars etc....I do wind up in the hospital for IV's to treat cepacia. It is hard to tell what degree of obstruction there is in my lungs from CF versus the restrictive component that I have from a failed diaphragm (I live on a vent because of this...definitely makes me more susceptible to bacteria). My Xrays aren't horrible, neither are my CT scans, I do have scarring from repeated infections. I think that if I didn't live on a vent, I might have been diagnosed even later in life. Prior to the vent, I was diagnosed with asthma in my 20's after years of symptoms and hospitalized a few times a year from exacerbations and infections. I just thought that I had a wicked case of asthma. CF was never considered until I grew out cepacia, then they looked at the whole picture regarding digestive issues (lost a tremendous amount of weight in a very short time, I was actually very overweight at one time, now of normal weight, sinus problems etc....I think that my FEV1 in my 20's was 80's (before my diaphragm bit the dust) and had an obstructive pattern.
I am amazed at how many adults are now being newly diagnosed. I did feel like I was suddenly tossed into the CF ring, but am relieved that there is finally an explaination of all of my symptoms that I experienced earlier on in my life. Now I am getting the right treatment and am feeling better because of it.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

I would say that my CF component in my health is not as severe as others who are my age and have CF, I was diagnosed at 33 with atypical CF, I am 35 now. Since my diagnosis, I have been on top of my treatments, enzymes, blood sugars etc....I do wind up in the hospital for IV's to treat cepacia. It is hard to tell what degree of obstruction there is in my lungs from CF versus the restrictive component that I have from a failed diaphragm (I live on a vent because of this...definitely makes me more susceptible to bacteria). My Xrays aren't horrible, neither are my CT scans, I do have scarring from repeated infections. I think that if I didn't live on a vent, I might have been diagnosed even later in life. Prior to the vent, I was diagnosed with asthma in my 20's after years of symptoms and hospitalized a few times a year from exacerbations and infections. I just thought that I had a wicked case of asthma. CF was never considered until I grew out cepacia, then they looked at the whole picture regarding digestive issues (lost a tremendous amount of weight in a very short time, I was actually very overweight at one time, now of normal weight, sinus problems etc....I think that my FEV1 in my 20's was 80's (before my diaphragm bit the dust) and had an obstructive pattern.
I am amazed at how many adults are now being newly diagnosed. I did feel like I was suddenly tossed into the CF ring, but am relieved that there is finally an explaination of all of my symptoms that I experienced earlier on in my life. Now I am getting the right treatment and am feeling better because of it.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

I would say that my CF component in my health is not as severe as others who are my age and have CF, I was diagnosed at 33 with atypical CF, I am 35 now. Since my diagnosis, I have been on top of my treatments, enzymes, blood sugars etc....I do wind up in the hospital for IV's to treat cepacia. It is hard to tell what degree of obstruction there is in my lungs from CF versus the restrictive component that I have from a failed diaphragm (I live on a vent because of this...definitely makes me more susceptible to bacteria). My Xrays aren't horrible, neither are my CT scans, I do have scarring from repeated infections. I think that if I didn't live on a vent, I might have been diagnosed even later in life. Prior to the vent, I was diagnosed with asthma in my 20's after years of symptoms and hospitalized a few times a year from exacerbations and infections. I just thought that I had a wicked case of asthma. CF was never considered until I grew out cepacia, then they looked at the whole picture regarding digestive issues (lost a tremendous amount of weight in a very short time, I was actually very overweight at one time, now of normal weight, sinus problems etc....I think that my FEV1 in my 20's was 80's (before my diaphragm bit the dust) and had an obstructive pattern.
I am amazed at how many adults are now being newly diagnosed. I did feel like I was suddenly tossed into the CF ring, but am relieved that there is finally an explaination of all of my symptoms that I experienced earlier on in my life. Now I am getting the right treatment and am feeling better because of it.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

I would say that my CF component in my health is not as severe as others who are my age and have CF, I was diagnosed at 33 with atypical CF, I am 35 now. Since my diagnosis, I have been on top of my treatments, enzymes, blood sugars etc....I do wind up in the hospital for IV's to treat cepacia. It is hard to tell what degree of obstruction there is in my lungs from CF versus the restrictive component that I have from a failed diaphragm (I live on a vent because of this...definitely makes me more susceptible to bacteria). My Xrays aren't horrible, neither are my CT scans, I do have scarring from repeated infections. I think that if I didn't live on a vent, I might have been diagnosed even later in life. Prior to the vent, I was diagnosed with asthma in my 20's after years of symptoms and hospitalized a few times a year from exacerbations and infections. I just thought that I had a wicked case of asthma. CF was never considered until I grew out cepacia, then they looked at the whole picture regarding digestive issues (lost a tremendous amount of weight in a very short time, I was actually very overweight at one time, now of normal weight, sinus problems etc....I think that my FEV1 in my 20's was 80's (before my diaphragm bit the dust) and had an obstructive pattern.
I am amazed at how many adults are now being newly diagnosed. I did feel like I was suddenly tossed into the CF ring, but am relieved that there is finally an explaination of all of my symptoms that I experienced earlier on in my life. Now I am getting the right treatment and am feeling better because of it.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dyza]

I guess I fit into the bracket you are descirbing, and I dont like to bring it up to often, as I am here as a member because of my son's CF.
I have a double DH117, with no symptoms, 40 years old, and I smoked for 23 years ( that would probably give you an indication as to how 'mild' I am ). I do see a CF doctor, for the last time later this month, he did not dx me as he felt that it would be unfair to do so for insurance porposes.
There are more and more adults getting discovered as a result of newborn screening.
Lauren (lightnlife) is correct, our son is what some would say is 'mild', and we treat him as he has CF not 'mild CF', we are very proactive about his treatments.
Craig

 

[dyza]

I guess I fit into the bracket you are descirbing, and I dont like to bring it up to often, as I am here as a member because of my son's CF.
I have a double DH117, with no symptoms, 40 years old, and I smoked for 23 years ( that would probably give you an indication as to how 'mild' I am ). I do see a CF doctor, for the last time later this month, he did not dx me as he felt that it would be unfair to do so for insurance porposes.
There are more and more adults getting discovered as a result of newborn screening.
Lauren (lightnlife) is correct, our son is what some would say is 'mild', and we treat him as he has CF not 'mild CF', we are very proactive about his treatments.
Craig

 

[dyza]

I guess I fit into the bracket you are descirbing, and I dont like to bring it up to often, as I am here as a member because of my son's CF.
I have a double DH117, with no symptoms, 40 years old, and I smoked for 23 years ( that would probably give you an indication as to how 'mild' I am ). I do see a CF doctor, for the last time later this month, he did not dx me as he felt that it would be unfair to do so for insurance porposes.
There are more and more adults getting discovered as a result of newborn screening.
Lauren (lightnlife) is correct, our son is what some would say is 'mild', and we treat him as he has CF not 'mild CF', we are very proactive about his treatments.
Craig

 

[dyza]

I guess I fit into the bracket you are descirbing, and I dont like to bring it up to often, as I am here as a member because of my son's CF.
I have a double DH117, with no symptoms, 40 years old, and I smoked for 23 years ( that would probably give you an indication as to how 'mild' I am ). I do see a CF doctor, for the last time later this month, he did not dx me as he felt that it would be unfair to do so for insurance porposes.
There are more and more adults getting discovered as a result of newborn screening.
Lauren (lightnlife) is correct, our son is what some would say is 'mild', and we treat him as he has CF not 'mild CF', we are very proactive about his treatments.
Craig

 

[dyza]

I guess I fit into the bracket you are descirbing, and I dont like to bring it up to often, as I am here as a member because of my son's CF.
I have a double DH117, with no symptoms, 40 years old, and I smoked for 23 years ( that would probably give you an indication as to how 'mild' I am ). I do see a CF doctor, for the last time later this month, he did not dx me as he felt that it would be unfair to do so for insurance porposes.
There are more and more adults getting discovered as a result of newborn screening.
Lauren (lightnlife) is correct, our son is what some would say is 'mild', and we treat him as he has CF not 'mild CF', we are very proactive about his treatments.
Craig

 

[dyza]

I guess I fit into the bracket you are descirbing, and I dont like to bring it up to often, as I am here as a member because of my son's CF.
I have a double DH117, with no symptoms, 40 years old, and I smoked for 23 years ( that would probably give you an indication as to how 'mild' I am ). I do see a CF doctor, for the last time later this month, he did not dx me as he felt that it would be unfair to do so for insurance porposes.
There are more and more adults getting discovered as a result of newborn screening.
Lauren (lightnlife) is correct, our son is what some would say is 'mild', and we treat him as he has CF not 'mild CF', we are very proactive about his treatments.
Craig

 

[hopesiris]

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[hopesiris]

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[hopesiris]

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[hopesiris]

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