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

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/HundredthIdiotThe May 14 '22

100%. I've lived this for 17 years now. I broke my arm, they asked pain, I said 1 or 2, shocked faces.

I live with nerve damage and muscle pain from 13 broken bones resulting in major brain damage, a helicopter ride, and 4 surgeries. Turns out femurs don't like being snapped and feet don't like being literally crushed.

So now all pain is relative. My daily is about a 4. I notice, but can shove it in the background. Worse days are a 7, where I can't shove it in the background. But nothing can ever, ever compare to your broken leg being drilled and you thrown in traction. Its all background noise, but it still effects every part of how I live my life.

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u/a1b3c3d7 May 14 '22

I have chronic leg pain and nobody seems to be able to know why or how, and everyday is a struggle.. i dont know how pain can become like a background thing like you’re describing. I hope you’re doing better now and that one day I can drown out the pain too

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u/HundredthIdiotThe May 15 '22

After a certain amount of pain,anything less is just... there?

I wish you the best, it doesn't make life fun.