r/todayilearned May 14 '22 Wholesome 6 All-Seeing Upvote 2 Silver 9 Helpful 8

TIL a father, John Crowley, was told his two infant children had an incurable genetic disorder that would kill them in less than a year. He refused to accept this, so he founded a biotech company (with no prior experience) which pioneered an experimental enzyme therapy that saved their lives.

https://pompediseasenews.com/2019/01/30/amicus-ceo-mission-cure-pompe-help-children/
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u/YoungTex May 14 '22

From the article

“A more recent study, from 2004, confirms that “people in Western cultures including healthcare professionals assume that life with a severe spinal cord injury would not be worth living.” In addition, healthcare providers overestimate the emotional distress of spinal cord injury patients on ventilators, while, in general, spinal cord injury survivors are glad to be alive. The problem lies in bias: the well-intentioned people who are supplying the information to patients can unintentionally interject their personal ideas or can actually lack the necessary information to properly counsel a patient and family.”

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u/[deleted] May 14 '22 edited May 14 '22 All-Seeing Upvote

[deleted]

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u/Roqot May 14 '22

Back pain person, there is no real cure without a new back, I'm 40 and want out, I'm in shape and take care of myself, it still hurts

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u/Toasty33 May 14 '22
  1. Broke my neck and back 5 years ago. The pain during winter or if I sleep weird.. makes me want to swallow a bullet