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Comment on Days of Awe: The clinical trial drug that might save my husband's lifeparent

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I second this advice.

Relatedly, I am in a Facebook group for $condition, and I can’t tell you how many times I’ve seen people post that a doctor prescribed them $treatment. Although $treatment is a very common thing to give to healthy people, $treatment is KNOWN to potentially cause death in patients with $condition. The other patients in the group always jump in and alert the original poster to the danger, but I can’t believe it still happens week after week and year after year.

My point is that fully outsourcing your healthcare—even to specialists—is a very bad idea, especially if you might have a rare condition of any sort. No doctor will ever care about you/your family member the way that you do. And they are always so pressed for time that mistakes are to be expected.

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