help

Jane

Digital opinion leader
my kids are Delta F508 and g542x

There are lots of others on this site with that mutation. If you do a search of the forum you can find several threads.


Interesting article Chris!! Thanks
 

blindhearted

New member
I have Delta F508 and G542X. I am 24 yrs old. I had Meconium Ileus also, my operation was at 24 hrs old. I also take enzymes and vitamins. CF is a progressive disease. that's how she is healthy and has CF. As she gets old, CF makes it self more apparent. Her lungs might not seem to be effected but it is important to do required treatments as if her lungs were effected. The live expectancy here is 36.8 yrs old. It seems to go up every year because they keep making new discoveries. But dont concentrate on the oldest person being 22yrs old...concentrate on your daughter's health and how to keep her as healthy as possible, as long as possible.
 

blindhearted

New member
I have Delta F508 and G542X. I am 24 yrs old. I had Meconium Ileus also, my operation was at 24 hrs old. I also take enzymes and vitamins. CF is a progressive disease. that's how she is healthy and has CF. As she gets old, CF makes it self more apparent. Her lungs might not seem to be effected but it is important to do required treatments as if her lungs were effected. The live expectancy here is 36.8 yrs old. It seems to go up every year because they keep making new discoveries. But dont concentrate on the oldest person being 22yrs old...concentrate on your daughter's health and how to keep her as healthy as possible, as long as possible.
 

blindhearted

New member
I have Delta F508 and G542X. I am 24 yrs old. I had Meconium Ileus also, my operation was at 24 hrs old. I also take enzymes and vitamins. CF is a progressive disease. that's how she is healthy and has CF. As she gets old, CF makes it self more apparent. Her lungs might not seem to be effected but it is important to do required treatments as if her lungs were effected. The live expectancy here is 36.8 yrs old. It seems to go up every year because they keep making new discoveries. But dont concentrate on the oldest person being 22yrs old...concentrate on your daughter's health and how to keep her as healthy as possible, as long as possible.
 

EnergyGal

New member
I have delta F508 and G542X I was diagnosed at Two years old because my bowel movements did not seem normal. My weight was normal at birth.

I am doing well and took very good care of my health.

From my own experience it is the CF therapies like The vest and chest percussion CPT or also called Postural drainage that helps extend the lives of CF folks.

The medications are very important but airway clearance is just as or more important. What I am trying to say if you cannot get the right medications please tell her to exercise daily and clear her lungs. Ask for help in your Country.
 

EnergyGal

New member
I have delta F508 and G542X I was diagnosed at Two years old because my bowel movements did not seem normal. My weight was normal at birth.

I am doing well and took very good care of my health.

From my own experience it is the CF therapies like The vest and chest percussion CPT or also called Postural drainage that helps extend the lives of CF folks.

The medications are very important but airway clearance is just as or more important. What I am trying to say if you cannot get the right medications please tell her to exercise daily and clear her lungs. Ask for help in your Country.
 

EnergyGal

New member
I have delta F508 and G542X I was diagnosed at Two years old because my bowel movements did not seem normal. My weight was normal at birth.

I am doing well and took very good care of my health.

From my own experience it is the CF therapies like The vest and chest percussion CPT or also called Postural drainage that helps extend the lives of CF folks.

The medications are very important but airway clearance is just as or more important. What I am trying to say if you cannot get the right medications please tell her to exercise daily and clear her lungs. Ask for help in your Country.
 

gago

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Risa</b></i>

I have delta F508 and G542X I was diagnosed at Two years old because my bowel movements did not seem normal. My weight was normal at birth.



I am doing well and took very good care of my health.



From my own experience it is the CF therapies like The vest and chest percussion CPT or also called Postural drainage that helps extend the lives of CF folks.



The medications are very important but airway clearance is just as or more important. What I am trying to say if you cannot get the right medications please tell her to exercise daily and clear her lungs. Ask for help in your Country.</end quote></div>

in our country,we dont have the vest....only enzymes and vit...
We dont even have Adek's ...
My sister,her husband and little babygirl are living at seaside....and air is beautifull there...
they exersize daily...her lungs are perfectly clear...like no having cf...for now...
 

gago

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Risa</b></i>

I have delta F508 and G542X I was diagnosed at Two years old because my bowel movements did not seem normal. My weight was normal at birth.



I am doing well and took very good care of my health.



From my own experience it is the CF therapies like The vest and chest percussion CPT or also called Postural drainage that helps extend the lives of CF folks.



The medications are very important but airway clearance is just as or more important. What I am trying to say if you cannot get the right medications please tell her to exercise daily and clear her lungs. Ask for help in your Country.</end quote></div>

in our country,we dont have the vest....only enzymes and vit...
We dont even have Adek's ...
My sister,her husband and little babygirl are living at seaside....and air is beautifull there...
they exersize daily...her lungs are perfectly clear...like no having cf...for now...
 

gago

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Risa</b></i>

I have delta F508 and G542X I was diagnosed at Two years old because my bowel movements did not seem normal. My weight was normal at birth.



I am doing well and took very good care of my health.



From my own experience it is the CF therapies like The vest and chest percussion CPT or also called Postural drainage that helps extend the lives of CF folks.



The medications are very important but airway clearance is just as or more important. What I am trying to say if you cannot get the right medications please tell her to exercise daily and clear her lungs. Ask for help in your Country.</end quote></div>

in our country,we dont have the vest....only enzymes and vit...
We dont even have Adek's ...
My sister,her husband and little babygirl are living at seaside....and air is beautifull there...
they exersize daily...her lungs are perfectly clear...like no having cf...for now...
 

relat

New member
hi gago,i would say don't worry too much,my brother just took his vest,and he is 26 yrs old.i think exercise is more important,and salt from sea,since she lives at seaside.adeks are vitamins a,d,e, and k.and no one knows how the disease goes,everyone is unique,may she is a mild case for many many years.so don't worry and stay calm...


relat,27,having brother 26 w/cf.
 

relat

New member
hi gago,i would say don't worry too much,my brother just took his vest,and he is 26 yrs old.i think exercise is more important,and salt from sea,since she lives at seaside.adeks are vitamins a,d,e, and k.and no one knows how the disease goes,everyone is unique,may she is a mild case for many many years.so don't worry and stay calm...


relat,27,having brother 26 w/cf.
 

relat

New member
hi gago,i would say don't worry too much,my brother just took his vest,and he is 26 yrs old.i think exercise is more important,and salt from sea,since she lives at seaside.adeks are vitamins a,d,e, and k.and no one knows how the disease goes,everyone is unique,may she is a mild case for many many years.so don't worry and stay calm...


relat,27,having brother 26 w/cf.
 
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