What is considered "mild" CF?

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anonymous

New member
Lyz-

I couldn't agree with you more. When I was young and went to the clinic (I am 27 now), the kids were sick. the friends I made were in an out of the hospital all of the time. Over the years, I have heard that nearly all of them have passed away. I find it hard to believe since I've never been sick. It is a very unpredictable disease. I was shocked to find out that my mutation was double DF508 a few years ago. Isn't this supposed to be the "worst" case scenario...? Sorry for the blah, blah, blah...

Mary
 
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anonymous

New member
Lyz-

I couldn't agree with you more. When I was young and went to the clinic (I am 27 now), the kids were sick. the friends I made were in an out of the hospital all of the time. Over the years, I have heard that nearly all of them have passed away. I find it hard to believe since I've never been sick. It is a very unpredictable disease. I was shocked to find out that my mutation was double DF508 a few years ago. Isn't this supposed to be the "worst" case scenario...? Sorry for the blah, blah, blah...

Mary
 
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Emily65Roses

New member
DeltaF508 is a Class Two mutation. One is the worst, and five is the mildest. It's not exactly that simple, but that's the basic idea of it. So two class twos isn't as bad as say... someone with a class two and a class one... or someone with two class ones.
 
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Emily65Roses

New member
DeltaF508 is a Class Two mutation. One is the worst, and five is the mildest. It's not exactly that simple, but that's the basic idea of it. So two class twos isn't as bad as say... someone with a class two and a class one... or someone with two class ones.
 
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thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Lyz-



I couldn't agree with you more. When I was young and went to the clinic (I am 27 now), the kids were sick. the friends I made were in an out of the hospital all of the time. Over the years, I have heard that nearly all of them have passed away. I find it hard to believe since I've never been sick. It is a very unpredictable disease. I was shocked to find out that my mutation was double DF508 a few years ago. Isn't this supposed to be the "worst" case scenario...? Sorry for the blah, blah, blah...



Mary<hr></blockquote>

You know, I know I've been "typed" as a child, but I myself have no clue what my mutation is. I'm going to have to find that out next time I'm at clinic.
 
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thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Lyz-



I couldn't agree with you more. When I was young and went to the clinic (I am 27 now), the kids were sick. the friends I made were in an out of the hospital all of the time. Over the years, I have heard that nearly all of them have passed away. I find it hard to believe since I've never been sick. It is a very unpredictable disease. I was shocked to find out that my mutation was double DF508 a few years ago. Isn't this supposed to be the "worst" case scenario...? Sorry for the blah, blah, blah...



Mary<hr></blockquote>

You know, I know I've been "typed" as a child, but I myself have no clue what my mutation is. I'm going to have to find that out next time I'm at clinic.
 
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anonymous

New member
Thanks Emily for the info. I didn't realize they were rated like that...really cool. However, (my silly thought) I think there have to be other supporting genetic factors other than just the 2 mutations. Is there any research on this possiblilty?

Mary
 
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anonymous

New member
Thanks Emily for the info. I didn't realize they were rated like that...really cool. However, (my silly thought) I think there have to be other supporting genetic factors other than just the 2 mutations. Is there any research on this possiblilty?

Mary
 
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Emily65Roses

New member
I don't know about other supporting genetic factors, but there are factors everywhere. Compliance, supportive family and friends, meds and therapies available to you, what you can afford, your environment, etc etc etc. It goes on and on. But the mutations alone, are classed like I explained. There's a whole lot that goes into how your CF is that that's why they can't predict how anyone will turn out.
 
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Emily65Roses

New member
I don't know about other supporting genetic factors, but there are factors everywhere. Compliance, supportive family and friends, meds and therapies available to you, what you can afford, your environment, etc etc etc. It goes on and on. But the mutations alone, are classed like I explained. There's a whole lot that goes into how your CF is that that's why they can't predict how anyone will turn out.
 
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imondeck

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Mild CF is my daughter Lauren 15, not diagnosed until 10. She hardly never coughs, very healthy, gaining weight, maybe too much weight, Ha ha. She has never been hospitalized for CF, never had IV's. The Drs. can only find one mutation, rare, L997F. So this to me is considered mild CF for now. I know at any time this can change.

Joan<hr></blockquote>

Joan, why was your daughter tested for cf if no symptoms (or did she have symptoms)? Did she have a sweat test? What lab did you all use for the found mutation?
 
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imondeck

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Mild CF is my daughter Lauren 15, not diagnosed until 10. She hardly never coughs, very healthy, gaining weight, maybe too much weight, Ha ha. She has never been hospitalized for CF, never had IV's. The Drs. can only find one mutation, rare, L997F. So this to me is considered mild CF for now. I know at any time this can change.

Joan<hr></blockquote>

Joan, why was your daughter tested for cf if no symptoms (or did she have symptoms)? Did she have a sweat test? What lab did you all use for the found mutation?
 
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proverbs3

New member
We were told my daughter was mild to moderate. She was diagnosed a few months ago and 9 years old. She just turned 10 in November. She coughed all the time, had large foul smelling bowel movements and had a rectal prolapse at the age of 3 and no one picked up on these symptoms. She was being treated for a chronic cough asthma and it wasn't until Sept, 2005 that we got a chest x-ray and the rest is history.

My question is I know I shouldn't compare numbers, but I just want to try and understand her PFT's. We've been in the hospital twice since November 1. We just got back home last Friday and her first number was 101 and second number was 85. I just don't know how high some people have breathed. And again not to compare, but to understand. I'm dying to ask next time we go in if they'll let me do it so I can see what I breathe.
 
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proverbs3

New member
We were told my daughter was mild to moderate. She was diagnosed a few months ago and 9 years old. She just turned 10 in November. She coughed all the time, had large foul smelling bowel movements and had a rectal prolapse at the age of 3 and no one picked up on these symptoms. She was being treated for a chronic cough asthma and it wasn't until Sept, 2005 that we got a chest x-ray and the rest is history.

My question is I know I shouldn't compare numbers, but I just want to try and understand her PFT's. We've been in the hospital twice since November 1. We just got back home last Friday and her first number was 101 and second number was 85. I just don't know how high some people have breathed. And again not to compare, but to understand. I'm dying to ask next time we go in if they'll let me do it so I can see what I breathe.
 
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Vampy

New member
i guess my docs would say i have a mild case of cf since my pulmonary funtion tests are in the high 80s and such. + they said i could live another 30 to 40 years if i did my treatments right..right now im 20. Thats if i dont want a child or do. Docs say ppl with cf and having a baby can make there cf worse. So i dunno really
 
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Vampy

New member
i guess my docs would say i have a mild case of cf since my pulmonary funtion tests are in the high 80s and such. + they said i could live another 30 to 40 years if i did my treatments right..right now im 20. Thats if i dont want a child or do. Docs say ppl with cf and having a baby can make there cf worse. So i dunno really
 
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thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Vampy</b></i><br>i guess my docs would say i have a mild case of cf since my pulmonary funtion tests are in the high 80s and such. + they said i could live another 30 to 40 years if i did my treatments right..right now im 20. Thats if i dont want a child or do. Docs say ppl with cf and having a baby can make there cf worse. So i dunno really<hr></blockquote>

I've heard from some people that if you have mild CF, and take care of your lungs - then getting pregnant is fine. I've also heard from my doc that some women report being in better health when they are pregnant, and that after you give birth every thing goes back to normal or better sometimes. Its not always a downhill battle when you're pregnant.
 
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thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Vampy</b></i><br>i guess my docs would say i have a mild case of cf since my pulmonary funtion tests are in the high 80s and such. + they said i could live another 30 to 40 years if i did my treatments right..right now im 20. Thats if i dont want a child or do. Docs say ppl with cf and having a baby can make there cf worse. So i dunno really<hr></blockquote>

I've heard from some people that if you have mild CF, and take care of your lungs - then getting pregnant is fine. I've also heard from my doc that some women report being in better health when they are pregnant, and that after you give birth every thing goes back to normal or better sometimes. Its not always a downhill battle when you're pregnant.
 
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