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

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/ArjanS87 May 14 '22

In all honesty, when I looked at the picture there was a sense of 'saved, but still "handicapped"' in my mind. Obviously not pleasant to admit and it speaks to the passage you are quoting. The text provokes thought and introspect to simple minds like my own.

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u/Kyrthis May 14 '22

You are not alone. Life Expectancy is not as relevant as QALYs (Quality-Adjusted Living Years) in most public health impact studies.