The CF Median Survival Age
According to the CF Foundation, the Median Survival Age for a person with cystic fibrosis is 37. I would like to point out how skewed this number is and how it in no way applies to me. This is not to be cynical, rather to show why I feel so lucky most of the time. I feel lucky because I have no idea why I'm still alive and still doing pretty good.
The Median Survival Age is just that - a median. In case you don't remember your math, the median is a middle number - not an average. The middle number when referring to survival age means 50% die BEFORE 37 and 50% die AFTER 37. So there's that flaw with using the Median. It means there's a 50/50 chance of surviving past 37 - sort of. It's supposed to give parents a number. If your child is born today they have a 50/50 chance of surviving to 37. I don't know what it means for me.
You need to take into account who is grouped into this statistic. The CF Foundation takes ALL CF patients in this number - the people who have different gene mutations (including less severe CF cases) and the people who are diagnoses later in life. I know a woman who was diagnoses at 16. I know a man diagnoses at 30, and I know a woman diagnosed at 60. I'm pretty sure there's a 100% chance that woman diagnosed at 60 is going to live past 37. I'm just saying.
I really want to know the statistics for the Double DeltaF508 people.... I'm pretty sure the situation is much more grim. These are the numbers we need to be seeing. We need to know that progress is being made - but remember that more and more older people are being diagnosed every year, skewing the CF Foundation's data in their favor. It makes them look like they are in a way "beating" this disease. It makes it look like there is hope for every child - but there isn't. Not just from that one number. That's why I fight so hard to raise money and volunteer and change things at the hospital. I want there to be a time when you can GUARANTEE that CF will not kill a child.
I would prefer a cure to skewed statistics. I would even settle for better patient support from the CF Foundation. I recently looked at their website and they finally have suggested things I have been screaming we should be doing for years... Do you think they would just hand me the foundation long enough for me to make things the way they should be?
So that's my rant on The CF Median Survival Age. My biggest problem is it doesn't give me an age. I don't know how long my lungs are going to hang on. C'mon. Give me a number. I can handle it. I want to know.
The Median Survival Age is just that - a median. In case you don't remember your math, the median is a middle number - not an average. The middle number when referring to survival age means 50% die BEFORE 37 and 50% die AFTER 37. So there's that flaw with using the Median. It means there's a 50/50 chance of surviving past 37 - sort of. It's supposed to give parents a number. If your child is born today they have a 50/50 chance of surviving to 37. I don't know what it means for me.
You need to take into account who is grouped into this statistic. The CF Foundation takes ALL CF patients in this number - the people who have different gene mutations (including less severe CF cases) and the people who are diagnoses later in life. I know a woman who was diagnoses at 16. I know a man diagnoses at 30, and I know a woman diagnosed at 60. I'm pretty sure there's a 100% chance that woman diagnosed at 60 is going to live past 37. I'm just saying.
I really want to know the statistics for the Double DeltaF508 people.... I'm pretty sure the situation is much more grim. These are the numbers we need to be seeing. We need to know that progress is being made - but remember that more and more older people are being diagnosed every year, skewing the CF Foundation's data in their favor. It makes them look like they are in a way "beating" this disease. It makes it look like there is hope for every child - but there isn't. Not just from that one number. That's why I fight so hard to raise money and volunteer and change things at the hospital. I want there to be a time when you can GUARANTEE that CF will not kill a child.
I would prefer a cure to skewed statistics. I would even settle for better patient support from the CF Foundation. I recently looked at their website and they finally have suggested things I have been screaming we should be doing for years... Do you think they would just hand me the foundation long enough for me to make things the way they should be?
So that's my rant on The CF Median Survival Age. My biggest problem is it doesn't give me an age. I don't know how long my lungs are going to hang on. C'mon. Give me a number. I can handle it. I want to know.
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