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Emily65Roses

New member
Degrees of CF?

For one: go for a genetic blood test. A lot more reliable. Sweat tests get screwed up all the time. And make sure it's at a CF center. You can find them on cff.org.

For two: there are varying degrees, yes. Each one of us is very different, really. WebMD may have said "mild" cases live to be normal ages, it may be true... but "mild" cases are very rare, and you can't count on getting one. There's also no way to tell who's "mild" and who's not (until they die at least... if someone is 70 when they die, you can call them mild... but that's really the only way to tell who got lucky).

Really for me, I hate the term "mild" with CF. It's PROGRESSIVE, and therefore changes with time. A child who may be mild when they're born could still die at 20 if they progress faster. I don't say this to scare you but because I don't want you to be misinformed. If you have any other questions, feel free to ask.
 
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Emily65Roses

New member
Degrees of CF?

For one: go for a genetic blood test. A lot more reliable. Sweat tests get screwed up all the time. And make sure it's at a CF center. You can find them on cff.org.

For two: there are varying degrees, yes. Each one of us is very different, really. WebMD may have said "mild" cases live to be normal ages, it may be true... but "mild" cases are very rare, and you can't count on getting one. There's also no way to tell who's "mild" and who's not (until they die at least... if someone is 70 when they die, you can call them mild... but that's really the only way to tell who got lucky).

Really for me, I hate the term "mild" with CF. It's PROGRESSIVE, and therefore changes with time. A child who may be mild when they're born could still die at 20 if they progress faster. I don't say this to scare you but because I don't want you to be misinformed. If you have any other questions, feel free to ask.
 
E

Emily65Roses

New member
Degrees of CF?

For one: go for a genetic blood test. A lot more reliable. Sweat tests get screwed up all the time. And make sure it's at a CF center. You can find them on cff.org.

For two: there are varying degrees, yes. Each one of us is very different, really. WebMD may have said "mild" cases live to be normal ages, it may be true... but "mild" cases are very rare, and you can't count on getting one. There's also no way to tell who's "mild" and who's not (until they die at least... if someone is 70 when they die, you can call them mild... but that's really the only way to tell who got lucky).

Really for me, I hate the term "mild" with CF. It's PROGRESSIVE, and therefore changes with time. A child who may be mild when they're born could still die at 20 if they progress faster. I don't say this to scare you but because I don't want you to be misinformed. If you have any other questions, feel free to ask.
 
G

greatbay

New member
Degrees of CF?

Hi, I'm Pat and I was recently dx with CF but only thought for years that I was just a carrier as my daughter passed away with CF in 1969. We had found out she had CF when I was 7 mos. pregnant with her brother. Chris was tested and back then we were told he was negative bc his results were only 47 & 50 below the level they assumed was CF positive. Well, he was tested again at a reg. hospital (after my diagnosis) and they said he was negative again...but my lung doc. told me it is too easy to screw up the sweat test at reg hosp. and I had been sent to CF clinic. Had my son go to CF clinic for test and he came back with CF. They did the test twice. Now we are both having genetic testing to find out what mutation. I have 3 other kids with second husband and they are also going for testing. Husband tested before we had kids, he is not carrier, but I want kids to know if they are.

Please go to a CF clinic for new testing for your child, they are the experts and they will be able to answer any and all questions you might have.

Sorry, so long and not really answering your original question. There are many degrees of symtoms of CF and you can be diagnosed at any age. As for me, I have had a series of lung problems since I was 30 and at 52 they were progressing rapidly and new kinds of things were being diagnosed. My CF is rapidly taking its' toll even with being on right meds now, so I guess you can say I was a mild case turned into severe case. This CF thing is just so unpredictable,

Good luck and come back and let us know how you make out.
 
G

greatbay

New member
Degrees of CF?

Hi, I'm Pat and I was recently dx with CF but only thought for years that I was just a carrier as my daughter passed away with CF in 1969. We had found out she had CF when I was 7 mos. pregnant with her brother. Chris was tested and back then we were told he was negative bc his results were only 47 & 50 below the level they assumed was CF positive. Well, he was tested again at a reg. hospital (after my diagnosis) and they said he was negative again...but my lung doc. told me it is too easy to screw up the sweat test at reg hosp. and I had been sent to CF clinic. Had my son go to CF clinic for test and he came back with CF. They did the test twice. Now we are both having genetic testing to find out what mutation. I have 3 other kids with second husband and they are also going for testing. Husband tested before we had kids, he is not carrier, but I want kids to know if they are.

Please go to a CF clinic for new testing for your child, they are the experts and they will be able to answer any and all questions you might have.

Sorry, so long and not really answering your original question. There are many degrees of symtoms of CF and you can be diagnosed at any age. As for me, I have had a series of lung problems since I was 30 and at 52 they were progressing rapidly and new kinds of things were being diagnosed. My CF is rapidly taking its' toll even with being on right meds now, so I guess you can say I was a mild case turned into severe case. This CF thing is just so unpredictable,

Good luck and come back and let us know how you make out.
 
G

greatbay

New member
Degrees of CF?

Hi, I'm Pat and I was recently dx with CF but only thought for years that I was just a carrier as my daughter passed away with CF in 1969. We had found out she had CF when I was 7 mos. pregnant with her brother. Chris was tested and back then we were told he was negative bc his results were only 47 & 50 below the level they assumed was CF positive. Well, he was tested again at a reg. hospital (after my diagnosis) and they said he was negative again...but my lung doc. told me it is too easy to screw up the sweat test at reg hosp. and I had been sent to CF clinic. Had my son go to CF clinic for test and he came back with CF. They did the test twice. Now we are both having genetic testing to find out what mutation. I have 3 other kids with second husband and they are also going for testing. Husband tested before we had kids, he is not carrier, but I want kids to know if they are.

Please go to a CF clinic for new testing for your child, they are the experts and they will be able to answer any and all questions you might have.

Sorry, so long and not really answering your original question. There are many degrees of symtoms of CF and you can be diagnosed at any age. As for me, I have had a series of lung problems since I was 30 and at 52 they were progressing rapidly and new kinds of things were being diagnosed. My CF is rapidly taking its' toll even with being on right meds now, so I guess you can say I was a mild case turned into severe case. This CF thing is just so unpredictable,

Good luck and come back and let us know how you make out.
 
B

BaylorCrew07

New member
Degrees of CF?

Hi Amy, welcome to the site! <img src="i/expressions/face-icon-small-smile.gif" border="0">

There are different severities of CF. My CF is "mild" right now (my PFTs are currently 117%), but CF is progressive in nature, so I'm not sure how long I will be a "mild case."

It's good that you are going to take him back for another sweat test. My first 3 sweat tests were positive, then they tested me at a CF center, and the sweat tests kept coming back inconclusive (couldn't say yes or no), so they decided I didn't have CF when I was an infant(this was before they discovered the CF gene, etc)

Anyway, I did not have typical CF symptoms as an infant other than losing weight and having salty skin. My lungs are great, my main problems are sinus issues and some digestive problems. After having 2 sinus surgeries & other random problems and researching CF on the internet (as it sounds like you did), I also read about mild cases, so I decided to get tested again 2 years ago. Sure enough, the sweat test and the genetic test came back positive.

I know this must be stressful on you taking him back to get another test, but I hope it goes well, and that you hear good news that he does not have CF. good luck!
 
B

BaylorCrew07

New member
Degrees of CF?

Hi Amy, welcome to the site! <img src="i/expressions/face-icon-small-smile.gif" border="0">

There are different severities of CF. My CF is "mild" right now (my PFTs are currently 117%), but CF is progressive in nature, so I'm not sure how long I will be a "mild case."

It's good that you are going to take him back for another sweat test. My first 3 sweat tests were positive, then they tested me at a CF center, and the sweat tests kept coming back inconclusive (couldn't say yes or no), so they decided I didn't have CF when I was an infant(this was before they discovered the CF gene, etc)

Anyway, I did not have typical CF symptoms as an infant other than losing weight and having salty skin. My lungs are great, my main problems are sinus issues and some digestive problems. After having 2 sinus surgeries & other random problems and researching CF on the internet (as it sounds like you did), I also read about mild cases, so I decided to get tested again 2 years ago. Sure enough, the sweat test and the genetic test came back positive.

I know this must be stressful on you taking him back to get another test, but I hope it goes well, and that you hear good news that he does not have CF. good luck!
 
B

BaylorCrew07

New member
Degrees of CF?

Hi Amy, welcome to the site! <img src="i/expressions/face-icon-small-smile.gif" border="0">

There are different severities of CF. My CF is "mild" right now (my PFTs are currently 117%), but CF is progressive in nature, so I'm not sure how long I will be a "mild case."

It's good that you are going to take him back for another sweat test. My first 3 sweat tests were positive, then they tested me at a CF center, and the sweat tests kept coming back inconclusive (couldn't say yes or no), so they decided I didn't have CF when I was an infant(this was before they discovered the CF gene, etc)

Anyway, I did not have typical CF symptoms as an infant other than losing weight and having salty skin. My lungs are great, my main problems are sinus issues and some digestive problems. After having 2 sinus surgeries & other random problems and researching CF on the internet (as it sounds like you did), I also read about mild cases, so I decided to get tested again 2 years ago. Sure enough, the sweat test and the genetic test came back positive.

I know this must be stressful on you taking him back to get another test, but I hope it goes well, and that you hear good news that he does not have CF. good luck!
 
M

mom2lillian

New member
Degrees of CF?

I am sorry for the stress you are going through. I am glad you are getting your son tested again.

Do as was recommended and go to a CF center and get a blood test through ambry genetics.

I am 'mild' CF, I also dont like that term as you never know. I was diagnosed at 21 years of age, I had 4 or 5 inconclusive borderline+ and negative tests as a teenager and it was only 6 years ago I got ill enough they dx me by symptoms and 3 years ago they finally were able to find both my gene mutations. I currently have 97% functions but you never know how things will play out.

Please continue posting your concerns and questions, you have come to the right place!
 
M

mom2lillian

New member
Degrees of CF?

I am sorry for the stress you are going through. I am glad you are getting your son tested again.

Do as was recommended and go to a CF center and get a blood test through ambry genetics.

I am 'mild' CF, I also dont like that term as you never know. I was diagnosed at 21 years of age, I had 4 or 5 inconclusive borderline+ and negative tests as a teenager and it was only 6 years ago I got ill enough they dx me by symptoms and 3 years ago they finally were able to find both my gene mutations. I currently have 97% functions but you never know how things will play out.

Please continue posting your concerns and questions, you have come to the right place!
 
M

mom2lillian

New member
Degrees of CF?

I am sorry for the stress you are going through. I am glad you are getting your son tested again.

Do as was recommended and go to a CF center and get a blood test through ambry genetics.

I am 'mild' CF, I also dont like that term as you never know. I was diagnosed at 21 years of age, I had 4 or 5 inconclusive borderline+ and negative tests as a teenager and it was only 6 years ago I got ill enough they dx me by symptoms and 3 years ago they finally were able to find both my gene mutations. I currently have 97% functions but you never know how things will play out.

Please continue posting your concerns and questions, you have come to the right place!
 
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