Frankly, as somebody with 2 rare autoimmune nerve diseases (affecting my peripheral nervous system), who is disabled, I am not excited about this news. Do they have any sort of residual neuropathic pain, either from their injury or the procedure? What sort of functional limitations do they have? Did their autonomic dysfunction improve (extremely unlikely to improve with a nerve transfer procedure, as described above)…
I absolutely agree that lots of 'inspiring' disability coverage seems hostile and dehumanizing, celebrating changes that make disability invisible rather than those that help people. But a lot of social-model reactions to that actually give me the same feeling of being more worried about social perceptions than individual well-being. I'm sure this is influenced by my personal and first-hand experiences, which have mo…
A lot of this stuff is frustrating to me. I live with 2 rare autoimmune neurological diseases, with one of them being very rare, which changes the rules of the game, almost completely. I really should not be alive and I constantly worry about making a bad move medically because my care is complex. Even turning 30 felt like a milestone for me. I almost constantly have to worry about access to care, too, which is why I became a European Union citizen, in addition to being American. But, it is not due to typical things that people worry about like having access to insurance or paying for it. It basically is for logistical reasons.
My training is in electrical engineering. From my standpoint, I can tell the difference between a gimmicky medical device and something that is promising. With surgeries, I would definitely say to a lesser degree, but I am always skeptical about the consequences. I also do not know how things typically play out long-term, especially living with rare diseases. I am always skeptical in general, and for good reasons. I have always been careful about what moves I make medically. I am also extremely stubborn, and perhaps that is why I am still alive.
Either way, medicine in the past 10 years or so has started to change profoundly. I do think promising things will occur, perhaps on a timeline even. However, access to things, such as in the US, will be of a different story. That is another reason why stories like this bother me, even though it is far from happening logistically, in this case.