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DDF508
- Thread starter NancyLKF
- Start date
M
Mommafirst
Guest
My daughter is not ddf508, but it is not true. ddf508 is the most common combination, and it is "classic" CF, but it is not the most severe.
Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
M
Mommafirst
Guest
My daughter is not ddf508, but it is not true. ddf508 is the most common combination, and it is "classic" CF, but it is not the most severe.
Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
M
Mommafirst
Guest
My daughter is not ddf508, but it is not true. ddf508 is the most common combination, and it is "classic" CF, but it is not the most severe.
Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
M
Mommafirst
Guest
My daughter is not ddf508, but it is not true. ddf508 is the most common combination, and it is "classic" CF, but it is not the most severe.
Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
M
Mommafirst
Guest
My daughter is not ddf508, but it is not true. ddf508 is the most common combination, and it is "classic" CF, but it is not the most severe.
<br />
<br />Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
<br />
<br />Also keep in mind that genetic mutations is only a small part of how this disease plays out. Two siblings with the same genes can have drastically different outcomes. There is no great predictors, I'm sorry -- I know the desire to know how this is all gonna go down. But we can only give our kids the best preventative care.
PedsNP2007
New member
Nancy,
First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
My brother, now deceased, compensated with severe lung disease all his life.
So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
Jenn
30 yo cf
First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
My brother, now deceased, compensated with severe lung disease all his life.
So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
Jenn
30 yo cf
PedsNP2007
New member
Nancy,
First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
My brother, now deceased, compensated with severe lung disease all his life.
So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
Jenn
30 yo cf
First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
My brother, now deceased, compensated with severe lung disease all his life.
So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
Jenn
30 yo cf
PedsNP2007
New member
Nancy,
First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
My brother, now deceased, compensated with severe lung disease all his life.
So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
Jenn
30 yo cf
First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
My brother, now deceased, compensated with severe lung disease all his life.
So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
Jenn
30 yo cf
PedsNP2007
New member
Nancy,
First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
My brother, now deceased, compensated with severe lung disease all his life.
So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
Jenn
30 yo cf
First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
My brother, now deceased, compensated with severe lung disease all his life.
So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
Jenn
30 yo cf
PedsNP2007
New member
Nancy,
<br />First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
<br />
<br />Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
<br />
<br />I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
<br />
<br />I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
<br />
<br />My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
<br />
<br />My brother, now deceased, compensated with severe lung disease all his life.
<br />
<br />So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
<br />
<br />One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
<br />
<br />I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
<br />
<br />Jenn
<br />30 yo cf
<br />First of all, I am sorry you have had a tumultuous last 10 days with finding out your beautiful baby girl now has CF.
<br />
<br />Second of all, please do not despair regarding the diagnosis of DDf508 -- is Maggie's genotype back already?
<br />
<br />I wanted to let you know that just because one has DDf508 does not necessarily mean that individual will be stricken with a horrendous case of CF. True, there are some kids who have bad cases immediately after birth, but there are many that are in our 20-30's (and older!) who are still living productive lives.
<br />
<br />I am one of 3 CF children who have DDf508. We all have different CF presentations. I am 30 years old, work full-time, go in the hospital 2 times per year, am on maintanence meds at home, and am able to maintain a healthy weight (I eat a lot of calories). I "look" like I have CF with the barrel chest, clubbing, and productive cough (only those who know CF can tell, others just assume I am a smoker or have chronic asthma). So I consider myself to have a mild case of CF. I live a relatively normal life (granted, I think it is normal since I was raised in a way that doing therapies is not abnormal... it's part of my life).
<br />
<br />My sister is moderate CF-wise. She is a stay at home mom now and works hard to keep herself healthy. She does have more lung involvement with more lung disease per xray and PFTs.
<br />
<br />My brother, now deceased, compensated with severe lung disease all his life.
<br />
<br />So there are variable presentations (phenotype of the disease genetics). I would be aware that vigilance and pro-activeness is vital in this disease. Doing therapies (vest, nebulizer) when she is old enough and using enzymes for feeds is crucial in managing CF.
<br />
<br />One word of advice: treat CF as it's a normal thing in your daughter's life. Don't treat it as the elephant in the room... I knew I had CF as a little kid, that I needed chest pats twice a day, pills to help me get nutrients from food, etc. I was pushed to be active, playing soccer.. it was a great thing to stay healthy and as active as possible. I was NEVER embarrassed with having CF. I am still not embarrassed though I keep it quiet at work (though several doctors and my nurse practitioner coworkers know of my CF). I just prefer that not everyone in the world know at work. By not being embarrassed growing up, I never skipped a treatment on purpose to hide from others etc (I skipped at times due to stupid teenager behavior/rebellion haha).
<br />
<br />I am glad you found us here... Please feel free to post often with any concerns, questions, etc... You'll find a lot of support here.
<br />
<br />Jenn
<br />30 yo cf
I think Jenn covered about everything. I also am DDF508. My symptoms as a kid were all digestive. I didnt develop lung symptoms until after my dx at 7 years old.
I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
HUGS
I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
HUGS
I think Jenn covered about everything. I also am DDF508. My symptoms as a kid were all digestive. I didnt develop lung symptoms until after my dx at 7 years old.
I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
HUGS
I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
HUGS
I think Jenn covered about everything. I also am DDF508. My symptoms as a kid were all digestive. I didnt develop lung symptoms until after my dx at 7 years old.
I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
HUGS
I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
HUGS
I think Jenn covered about everything. I also am DDF508. My symptoms as a kid were all digestive. I didnt develop lung symptoms until after my dx at 7 years old.
I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
HUGS
I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
HUGS
I think Jenn covered about everything. I also am DDF508. My symptoms as a kid were all digestive. I didnt develop lung symptoms until after my dx at 7 years old.
<br />
<br />I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
<br />
<br />My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
<br />
<br />I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />
<br />Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
<br />
<br />HUGS
<br />
<br />I grew up not being compliant because everyone thought I was on "borrowed time". So here I am 33, almost 34 years later, with a child.
<br />
<br />My CF has progressed. How much was from not being compliant? Hard to say. It might have happened no matter what.
<br />
<br />I cant do what I use to, but many of my friends at 40 without CF cant either <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />
<br />Dont put too much into the mutations. Use it as many other things with CF. ONLY a tool of information. Much like PFTs or other testing. Using ALL the tools instead of relying on just one is best!
<br />
<br />HUGS