The reports are in from our retinal photography session! The verdict for my right eye is the presence "fine drusen" (those tiny yellow lipid deposits in the center of the retina) while the left gets "some geographic atrophy." While these diagnoses might seem like cause for a freakout, comparing my pics to online galleries of retinal porn (click at your own risk!) has me feeling in pretty good shape. I already know what my disease is and have a sense of where it's headed.
What's more striking than the photos and what they mean, are the accompanying notes from the ophthalmologist and technician. Because reports like these usually remain in hands jutting out of labcoats, they tend to be about the patient (me) rather than to the patient (me again). While the labcoat-wearers here are all well intentioned and helpful, being passed these notes post-diagnosis makes me feel invisible—like a ghost eavesdropping on his own autopsy.
Also interesting is the technician's recommendation that, "Patient should continue regular follow-up care with their eye care provider." While this is again well-meaning, sound-seeming and gives the eye care industry some business, it's potentially unhelpful to the patient (yep, that's me again). Last time I completed a battery of tests over several visits to Will's Eye Institute, the ophthalmologist just said, "Looks like your rods are starting to dystrophy too," and then sent me on my way. These folks can tell me what's happening, but have never actually offered any support.
This is a big part of why we're doing this project, and why I'm really psyched to have a retinal photographer on board (and it's especially fab that she is also an artist and friend). The way we patients are treated (in both senses of the word) needs to change. Part of our research with this blog and the theatre piece that we're creating is to spark conversations around what that change could look like. How can eye care specialists go from being well-meaning to well- Add your thoughts in the comments below.
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Also interesting is the technician's recommendation that, "Patient should continue regular follow-up care with their eye care provider." While this is again well-meaning, sound-seeming and gives the eye care industry some business, it's potentially unhelpful to the patient (yep, that's me again). Last time I completed a battery of tests over several visits to Will's Eye Institute, the ophthalmologist just said, "Looks like your rods are starting to dystrophy too," and then sent me on my way. These folks can tell me what's happening, but have never actually offered any support.
This is a big part of why we're doing this project, and why I'm really psyched to have a retinal photographer on board (and it's especially fab that she is also an artist and friend). The way we patients are treated (in both senses of the word) needs to change. Part of our research with this blog and the theatre piece that we're creating is to spark conversations around what that change could look like. How can eye care specialists go from being well-meaning to well- Add your thoughts in the comments below.
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