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JazzysMom

New member
Last night my hubby & I had an indepth chat about CF, the genetics, statistics, tx etc. He asked me if I knew how many death directly related to CF took place annually. I could not answer that. The only info I had was the median age as of this year. He is sure that even tho CF "shortens" our lives that most CFers will die from something other than CF itself. The CFers that I have known or known of from the forums have all been directly related to CF. Some waiting for tx, some choosing not to have tx & some after having tx.......I tried to do some research on the good old internet this am, but to my surprise couldnt find any actual figures about this matter. He is interested in the USA at this point tho I am sure any figure would give him an idea. Does anyone know this info or have a better idea of where I can find any info on it? For those that dont like to speak of this part of CF....remember that my hubby is trying to "prove" that out of all CF dx only a % die from CF itself. I cant dispute this either way at this point~~
 
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anonymous

New member
No idea, wish I could help you. Unless the median age gets a huge boost and most of us start living into our 60's or 70's, I don't see anything but directly CF related causes killing us a majority of the time, anytime soon. I would think it would be like MD or something else with a relative short lifespan after diagnoses (though MD is probably quicker for most). Meaning we could still have accidental deaths, but the majority of the deaths will = Directly related to our disease, untill the median life expectancy drastically improves to naturally put us in the realm where normal people start to kick off.



Garyhairycheese
 
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coltsfan715

New member
I will try searching to see if I can find anything. I can say this I have known several CF patients, 8 of which I can think of right off hand, that have passed away. Out of those 1 was not caused by CF. He was at a party and someone got mad at him and came up behind him and hit him in the head with a blunt object and ended up killing him. Other than that though any CFer I have known or have heard of passing IS related to CF.

I will try to find something though and will let you know if I am able to come across some info.

Lindsey
 
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EnergyGal

New member
Hi Melissa

Common sense to me, says cf patients die from related cf complications. Unless someone is killed like Lindsey stated above, anything that will hurt the body probably would make the CF a much harder to treat. If someone survives a serious auto accident, complications of CF will set in. I knew of a man with CF who had a bad car accident broke many ribs and he needed a transplant that much sooner. Before the accident he was doing well with CF exercising and training and then his accident exacerbated his cf to the point of needing his transplant. Thankfully he did well with his transplant. He was my mentor and I read about him in the CF Round Table. Risa
 
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EnergyGal

New member
I may not die from CF lungs but I will die one day from related complications to a transplant unless I am wiped off the planet. Or if my CF sinuses cause a problem with my lungs then yes I can die of CF complications too. One day we will all be together in our CF heaven where we all deserve to be when we leave this life.
 
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anonymous

New member
this actually breaks it down for different countries:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.wrongdiagnosis.com/c/cf/stats.htm">http://www.wrongdiagnosis.com/c/cf/stats.htm</a>
 
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coltsfan715

New member
Hey Melissa,

I found this
"The most troublesome symptoms for CF are those related to the chest and around 97% of deaths in CF are due to pulmonary causes"

The site that I found that on was this
<a target=_blank class=ftalternatingbarlinklarge href="http://ep.bmjjournals.com/cgi/content/full/90/1/ep1">CF Link</a>

That sentence was in the section titled Clinical Features of CF. The date on the article was 2005 I think, so fairly recent (within a yr - duh lol).

Hope that is what you were looking for. I wasn't able to find anything else with a percentage really other than that.

Lindsey
 
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anonymous

New member
I think malnourishment could be a leading cause of death. When the cF lungs become so deteriotated, a person with CF needs to absorb as many nutrients as possible. when the breathing is very difficult cf patients burn more calories making it difficult for them to keep their weight up to fight infection.

The bottom line is to take as best care of yourself when you are healthy so you can maximize your life as long as possible *period exclamation point*
 
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anonymous

New member
I think malnourishment could be a leading cause of death. When the cF lungs become so deteriotated, a person with CF needs to absorb as many nutrients as possible. when the breathing is very difficult cf patients burn more calories making it difficult for them to keep their weight up to fight infection.

The bottom line is to take as best care of yourself when you are healthy so you can maximize your life as long as possible *period exclamation mark*
 
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anonymous

New member
I think malnourishment could be a leading cause of death. When the cF lungs become so deteriotated, a person with CF needs to absorb as many nutrients as possible. when the breathing is very difficult cf patients burn more calories making it difficult for them to keep their weight up to fight infection.

The bottom line is to take as best care of yourself when you are healthy so you can maximize your life as long as possible *period exclamation mark*
 
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anonymous

New member
I'd think of car accidents as a leading cause of death of young adults. And then there's suicide too (would that be seen as CF related?). Not to mention the cancers.

The statistics would be hard to find. Death certificates list only exactly what caused death. If it is an accident or suicide it doesn't mention any other medical condition at all. If it is something health related it might say something like
sepsis (days)
cysitc fibrosis (years)
but not always... sometimes it only mentions the "days" thing. And if someone had lung cancer and cystic fibrosis but got sepsis it might just say
sepsis (days)
lung cancer (years)
and never mention the CF at all.

You'd have to find the numbers by locating a cohort study (probably from CF centers) that follow CFers over time including death and cause of death.
But that wouldn't pick up a lot of folks.
 
J

JazzysMom

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

this actually breaks it down for different countries:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.wrongdiagnosis.com/c/cf/stats.htm">http://www.wrongdiagnosis.com/c/cf/stats.htm</a></end quote></div>


I briefly looked this over & will show my hubby. Initially looking I dont know of its accuracy, but its something to work with. Thank you everyone!
 
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