Article from Chicago Lighthouse
Applications of High-Resolution Retinal Imaging in Achromatopsiaby Joseph Carroll, PhD
The Eye Institute, Medical College of Wisconsin
I always read these research reports with such mixed emotions. On one hand, I would love for there to be a "cure" for Charlotte; on the other, I don't want to get our hopes up. On the one hand, the researchers seem to be making great progress; on the other, any treatment will take a long time to get to market, with many setbacks. On the one hand, she could have greatly improved vision one day; on the other, her cone cells are deteriorating/dissapearing as she ages and her time is running out. On the one hand, there will eventually be a treatment; on the other, it will not be without significant risk.
It's such a rollercoaster. One day at a time...
Friday 28 June 2013
Monday 24 June 2013
Tuesday 18 June 2013
Playdate planning
Charlotte has her first drop-off playdate this week. I have been trying to walk the line between preparing the carer for keeping her safe on the walk home from school and having them to think it is all too daunting to take on.
I ended up saying "Don't worry too much, the worst that will happen will be that she falls over." I think I need a one liner about a single task, something like, "Don't forget, she can't see a step until it's too late".
I ended up saying "Don't worry too much, the worst that will happen will be that she falls over." I think I need a one liner about a single task, something like, "Don't forget, she can't see a step until it's too late".
Thursday 6 June 2013
Sunglasses A/B testing
I know there is some variation of opinion about red lenses within the Achromatopsia community but I thought I would share this little experience from yesterday.
Charlotte is finally old enough to start to make proper decisions and communicate them in ways that I can understand. We ventured out in bright sunlight, she was already wearing her third tier pair of sunglasses, her off-the-shelf Julbos. She seems to like wearing them indoors, she often goes and finds them for herself (and calls them her "special brights"). I suspected that she can't see as well with these as her Moorfields pair with prescription and custom tinted lenses (her "school brights"), so I stashed these in my bag as we walked out the door.
As soon as we stepped outdoors, I could feel her hand grip me tighter and her steps get smaller and more tentative. The difference between that and her ususal behaviour was remarkable. I stopped her and made her try on both pairs of glasses before choosing which to wear. She didn't want to experiment but quite quickly settled on the prescription lenses and we set off as normal.
Charlotte is finally old enough to start to make proper decisions and communicate them in ways that I can understand. We ventured out in bright sunlight, she was already wearing her third tier pair of sunglasses, her off-the-shelf Julbos. She seems to like wearing them indoors, she often goes and finds them for herself (and calls them her "special brights"). I suspected that she can't see as well with these as her Moorfields pair with prescription and custom tinted lenses (her "school brights"), so I stashed these in my bag as we walked out the door.
As soon as we stepped outdoors, I could feel her hand grip me tighter and her steps get smaller and more tentative. The difference between that and her ususal behaviour was remarkable. I stopped her and made her try on both pairs of glasses before choosing which to wear. She didn't want to experiment but quite quickly settled on the prescription lenses and we set off as normal.
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