5 ms·

> A student came to him, a beautiful 13-year-old girl, who said she wanted to be part of his theater group performing William Shakespeare’s plays. It would hav

> A student came to him, a beautiful 13-year-old girl, who said she wanted to be part of his theater group performing William Shakespeare’s plays. It would have been an ordinary request, save for the reality that the young girl had advanced cystic fibrosis and had been told she had only a brief time to live. and then... > She went on to become one Shakespearean heroine after another, each role performed with more emotional depth and strength than the one before. Years have now passed since she played Juliet. Against all expectations and medical prognoses, she has entered college, where she is pursuing a dual degree in medicine and theater, in which she will continue to “pass over” into one role after another. > That young woman’s exceptional example is not so much about whether the mind and heart can overcome the limitations of the body... I don't understand this. Is the writer implying that 'advanced cystic fibrosis' is a limitation of the body and not a real disease, and so she was able to 'beat it' by immersing herself in reading and drama? The 2 statements - "she had only a brief time to live" and "Years have now passed since she played Juliet. Against all expectations and medical prognoses" completely contradict each other. Did she 'beat the disease' (which seems improbable) or was she misdiagnosed in the first place?

joshgel 8y ago
Doctor here. Probably not misdiagnosed. It's a pretty solid diagnostic evaluation. (Can be hard to think of initially, but the testing is pretty accurate and reliable, so once you've thought of it you'll probably get it right). But phenotypes vary widely. And so mis-prognosed sounds more accurate here. Probably just as bad as a missed diagnosis, so this may be semantics...
flocial 8y ago
The passage is misleading but I think your interpretation is too literal as well. We don't know if she's still live but she's still well within the survival rate (according to Wikipedia). It most definitely improved her quality of life and perhaps that gave her system a boost. We do know that the mind might not be able to cure terminal diseases but it can be a powerful force in making life more manageable (placebo, etc.).
- ddrdrck_ 8y ago
  Some famous cases have been reported of deadly disease spontaneous remission. If it is not the mind then what else ?
chc 8y ago
I think you're creating a false dichotomy between "a real disease" and "a limitation of the body." Even for diseases that entirely result from external sources, our ability to survive them is a limitation of our body (e.g. some people will survive the same flu that other people die from). And cystic fibrosis is a genetic disorder, making it quite literally a limitation of your body as well as a real disease.
Normal_gaussian 8y ago
annecdata: I grew up with two CF children who are nearly as close as sisters to me. They are both alive, and "healthy", at least five years past what we had expected to be the years of their demise, and they show no signs of passing soon - and this is not just limited to them; their CF classes (which do still dwindle in size) are much larger than had been expected. There are many different kinds of CF, but across the board the treatment has improved massively. It's a testament to the advancing field, the strategy of the NHS, and the persistence of the parents and children, that the lifespans predicted (on solid evidence) for these children keep being invalidated and extended.
- Ntrails 8y ago
  > that the lifespans predicted (on solid evidence) for these children keep being invalidated and extended. My understanding is that they are also cautious in generating such estimates, excluding any non-concrete factors (improvements in healthcare etc) that might be used to modify a purely frequentist estimation given historical data. In general it's probably better to tell a cohort that they've an expected lifetime pessimistically than optimistically?
  - Normal_gaussian 8y ago
    Yes. They always couch their estimates with the 'using current methods'. They do a lot of work to play down expectations, especially with respect to the kinds of things that may be seen in the media
  - hinkley 8y ago
    It's shitty bedside manner though, and provably harmful. This reminds me of the story a few weeks ago of the hemophiliac kid who got HIV and then spent his whole childhood believing he would never grow up, never find love, never have a life. How many people would just give in and roll over on that sort of news? It's self fulfilling prophecy.
sn41 8y ago
Inherent in a diagnosis are some statistical assumptions. An individual case can beat the odds, so to speak.

joshgel 8y ago

Doctor here. Probably not misdiagnosed. It's a pretty solid diagnostic evaluation. (Can be hard to think of initially, but the testing is pretty accurate and reliable, so once you've thought of it you'll probably get it right). But phenotypes vary widely. And so mis-prognosed sounds more accurate here. Probably just as bad as a missed diagnosis, so this may be semantics...

flocial 8y ago

The passage is misleading but I think your interpretation is too literal as well. We don't know if she's still live but she's still well within the survival rate (according to Wikipedia). It most definitely improved her quality of life and perhaps that gave her system a boost. We do know that the mind might not be able to cure terminal diseases but it can be a powerful force in making life more manageable (placebo, etc.).

ddrdrck_ 8y ago
Some famous cases have been reported of deadly disease spontaneous remission. If it is not the mind then what else ?

chc 8y ago

I think you're creating a false dichotomy between "a real disease" and "a limitation of the body." Even for diseases that entirely result from external sources, our ability to survive them is a limitation of our body (e.g. some people will survive the same flu that other people die from). And cystic fibrosis is a genetic disorder, making it quite literally a limitation of your body as well as a real disease.

Normal_gaussian 8y ago

annecdata: I grew up with two CF children who are nearly as close as sisters to me. They are both alive, and "healthy", at least five years past what we had expected to be the years of their demise, and they show no signs of passing soon - and this is not just limited to them; their CF classes (which do still dwindle in size) are much larger than had been expected. There are many different kinds of CF, but across the board the treatment has improved massively. It's a testament to the advancing field, the strategy of the NHS, and the persistence of the parents and children, that the lifespans predicted (on solid evidence) for these children keep being invalidated and extended.

Ntrails 8y ago
> that the lifespans predicted (on solid evidence) for these children keep being invalidated and extended. My understanding is that they are also cautious in generating such estimates, excluding any non-concrete factors (improvements in healthcare etc) that might be used to modify a purely frequentist estimation given historical data. In general it's probably better to tell a cohort that they've an expected lifetime pessimistically than optimistically?
- Normal_gaussian 8y ago
  Yes. They always couch their estimates with the 'using current methods'. They do a lot of work to play down expectations, especially with respect to the kinds of things that may be seen in the media
- hinkley 8y ago
  It's shitty bedside manner though, and provably harmful. This reminds me of the story a few weeks ago of the hemophiliac kid who got HIV and then spent his whole childhood believing he would never grow up, never find love, never have a life. How many people would just give in and roll over on that sort of news? It's self fulfilling prophecy.

sn41 8y ago

Inherent in a diagnosis are some statistical assumptions. An individual case can beat the odds, so to speak.