I thought a lot about putting this into the talk, and then I decided it needed to be in there. So what I have noticed over the years is that many patients and many families who have one of these inherited eye diseases basically have a form of posttraumatic stress disorder. And the reason is they were minding their own business, you know, with some kind of symptom. They thought they might need some new glasses or something, and they go in to get their glasses, and somebody looks in there and sees an abnormal pigment or something, and they turn and say, well, you know, you have, fill in the blank, retinitis pigmentosa, Usher syndrome, whatever, and they say this thing, and you go, well what is that? What does that mean? And they say, well, it means you're going to go blind, and if you told someone out on the street that some doctor said that to somebody, they wouldn't believe you. They would not believe you. And yet every single patient I see has been told that at least once by somebody they see, just like that, you're going to go blind. Well, what are we going to do about it? Because, you know, you have a ruptured appendix, you're expecting the doctor to say we'll rush upstairs and fix the ruptured appendix. No, you have a ruptured appendix. Go home.
What? Look it up on the web. We'll get somebody to print it for you on the way out. You think I'm kidding. They go and look up something on the web and print it out on a dot matrix printer and hand it to you and you stagger out to your car in complete and utter disbelief, and it is exactly the same as witnessing an automobile accident where somebody is killed or a combat injury or something like that. It's exactly the same, and it has all of the same symptoms associated with it. It's associated with anxiety and depression and poor sleep and these uncontrollable thoughts that you think you've got it all tamped down but you don't have it all tamped down because there are these triggers.
What are the triggers? Well, some well meaning soul sends you an email because they just found this thing, you know, they were reading this thing and they found this thing that says that maybe CRISPR won't work or something, and then suddenly it just floods back to you exactly you remember vividly everything in that room that that doctor said and you're right, doctor, it's just like posttraumatic stress syndrome. But you know what? The war correspondents, the helicopter pilots, the medics, the doctors back at the far away base taking care of the soldiers, they have posttraumatic stress syndrome too, they have this too, they want this outcome as badly as you do, because when they get the question or the email and the anger, it wakes it up in them too.
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