tough topic- portrayed life expectancy

[hmw]

Finding the large number of mutations out there via genetic testing IS an advancement in medical science, because it allows for earlier dx- and many of those mutations can and do cause severe disease. HOWEVER, many who are dx'ed much later in life with rare mutations clearly are not affected the same way as most of the CF population- so in addition to being an 'advancement', it really shows CF as the spectrum disease it is.
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<br />But like any spectrum, you are going to have EXTREMES that do *not* represent what the vast majority of those with this disease are realistically going to experience. Do the majority of those with CF die as newborns? Thank God, no. Do the majority of those with CF live to their 70's or beyond? Unfortunately, no. Everyone has 'heard of' those who have because they are so exceptionally rare out of the 30,000+ with the disease in this country!
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<br />It becomes a real problem when those that represent CF for the public (whether it's the CFF or some of the other organizations out there) take the 'healthiest' percentage of that spectrum and portray THEM as what the 'average' person with CF looks like/lives. That does a huge disservice to so the struggles of so many.

 

[Mommafirst]

This is an issue that seriously keeps me up at night sometimes. The stats do not make a whole lot of sense. Predicted median life expectancy = 37, but elsewhere on the CFF web page I found a statement that said less than half of all with CF (something like 48%) will no live past 18. I feel your frustration. I am a parent of a CF patient, but I don't want to be snowed into some false reality. The only way to really fight this disease when the patient is still quite healthy is to KNOW what you are fighting. Waiting until CF takes a serious hold is too late....and sadly there is no way to predict when CF will get tougher for any "mild" patient.

 

[Mommafirst]

This is an issue that seriously keeps me up at night sometimes. The stats do not make a whole lot of sense. Predicted median life expectancy = 37, but elsewhere on the CFF web page I found a statement that said less than half of all with CF (something like 48%) will no live past 18. I feel your frustration. I am a parent of a CF patient, but I don't want to be snowed into some false reality. The only way to really fight this disease when the patient is still quite healthy is to KNOW what you are fighting. Waiting until CF takes a serious hold is too late....and sadly there is no way to predict when CF will get tougher for any "mild" patient.

 

[Mommafirst]

This is an issue that seriously keeps me up at night sometimes. The stats do not make a whole lot of sense. Predicted median life expectancy = 37, but elsewhere on the CFF web page I found a statement that said less than half of all with CF (something like 48%) will no live past 18. I feel your frustration. I am a parent of a CF patient, but I don't want to be snowed into some false reality. The only way to really fight this disease when the patient is still quite healthy is to KNOW what you are fighting. Waiting until CF takes a serious hold is too late....and sadly there is no way to predict when CF will get tougher for any "mild" patient.

 

[Lex]

You see, the thing is, I have CF and I'M STILL ALIVE. Getting a TX was a treatment option.

If I didn't do 2 hour breathing treatments for 20 years, I would've died a long time ago. So...the minute any of us take any kind of medicine where medical science intervenes, you should be considered dead.

The logic, in my opinion, is without logic.

 

[Lex]

You see, the thing is, I have CF and I'M STILL ALIVE. Getting a TX was a treatment option.

If I didn't do 2 hour breathing treatments for 20 years, I would've died a long time ago. So...the minute any of us take any kind of medicine where medical science intervenes, you should be considered dead.

The logic, in my opinion, is without logic.

 

[Lex]

You see, the thing is, I have CF and I'M STILL ALIVE. Getting a TX was a treatment option.
<br />
<br />If I didn't do 2 hour breathing treatments for 20 years, I would've died a long time ago. So...the minute any of us take any kind of medicine where medical science intervenes, you should be considered dead.
<br />
<br />The logic, in my opinion, is without logic.