I’m Bill Cox, living in Chapel Hill, North Carolina. This summer I was diagnosed with Stargardt’s Disease. I’m 47 years old and can still drive legally. I have two kids and a wife who depend on my ability to get paid to program computers, and the central vision loss has really freaked me out.
It’s very rare to have such late vision loss due to Stargardt’s, and I think it probably is because I also have essentially non-functioning red cones. People with Stargardt’s Disease wear sunglasses, sometimes even indoors, because more cones firing results in more vision loss. I was probably blessed to have only 2/3rds as many functional cones as other people with Stargardt’s Disease, and it probably is why I still have a nice portion of central vision in one eye at my age. By my estimate, there are about 2.5 people born each year in the US with both Stargardt’s and faulty red cones. Lucky me!
I’ve adapted to make sure I can still make money as a programmer. There are different routes, but as a Linux programmer, I found the Vinux distro incredibly valuable, and I’ve done a lot to contribute to Vinux ever since. One thing that surprises me is there does not seem to be other programmers with Stargardt’s Disease contributing to Vinux. As non-blind people who just need magnification and text-to-speech, we can really help these guys. When a blind guy loses speech, he has no way to move forward, other than a reboot. A low vision guy can stick his eye near the screen and figure out what is going on. Where are all the Stargardt’s inflicted programmers? Shouldn’t there be a ton of us?
One good result of vision loss is I have learned to listen at a faster speed. I listen to Eloquence TTS at about 600 words per minute (about 3.2 X faster than default). I love it. I listen to books most days, and far faster than I could ever read. As a programmer and being good at math, I’ve written a new program called sonic that can speed up speech files by up to 6X and still be understandable by the blind. My hope is that all smart devices will be able to talk and listen, making them far more accessible.