She had a bunch of other comorbidities (at least one of which sounded much, much worse) but also, yeah…
In the article it mentions one of her friends who was there at the end having the other rare condition (can’t remember the name), but not Ehlers-Danlos, and she looked much less sick, so maybe… It’s the combination, and, as you say, the spectrum of possible effects…
It’s like with the two autoimmune conditions I have. One is completely invisible most of the time, and the other is hardly noticeable, too, because I “mask it” pretty well…
And yet there are other people for whom the onset -> terminal/severe disability process takes much, much less time, so… These things are inherently random, which is partly what makes them so frustrating…
I’m guessing it doesn’t normally necessitate removal of an eye, right?? So that must have been whatever else she had shivers…
Honestly, from what I’ve seen of similar past cases like this, with rapid decline, it’s the combination and interaction of the various conditions that seems to lead to the worst outcomes…
Hers sounded and looked particularly brutal, so, for the sake of the person you know, I sincerely hope that the combination of it all is exceptionally rare, as the article sort of points out/alludes to… 😑
I know someone with Ehlers-Danlos. There must be a spectrum because that person is completely fine...
She had a bunch of other comorbidities (at least one of which sounded much, much worse) but also, yeah…
In the article it mentions one of her friends who was there at the end having the other rare condition (can’t remember the name), but not Ehlers-Danlos, and she looked much less sick, so maybe… It’s the combination, and, as you say, the spectrum of possible effects…
It’s like with the two autoimmune conditions I have. One is completely invisible most of the time, and the other is hardly noticeable, too, because I “mask it” pretty well…
And yet there are other people for whom the onset -> terminal/severe disability process takes much, much less time, so… These things are inherently random, which is partly what makes them so frustrating…
I’m guessing it doesn’t normally necessitate removal of an eye, right?? So that must have been whatever else she had shivers…
Honestly, from what I’ve seen of similar past cases like this, with rapid decline, it’s the combination and interaction of the various conditions that seems to lead to the worst outcomes…
Hers sounded and looked particularly brutal, so, for the sake of the person you know, I sincerely hope that the combination of it all is exceptionally rare, as the article sort of points out/alludes to… 😑