Blind and Visually Impaired Community
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Young (27y/o) Macular Degeneration Advice (self.Blind)
submitted 5.3252058577674894y ago by refrigagator
Hello /r/blind I just had my second bout of macular degeneration (almost exactly a year from my last issue). I was just starting to think my vision was fine and it was a one off thing. Unfortunately I started having issues in my other eye now and just got an Avastin shot to prevent any more loss.
I have grieved a bit about it but I'm starting to figure out what I should do now. I'm a software engineer and my vision is still good enough that increasing font size works. I'm trying to figure out if I should start learning accessibility tools now (screen reader) while I still have my central vision.
The hardest part is knowing when, and I know none of you can answer that because it varies so much. I've tried to find progression estimates but it's hard for me to find anything useful. Is it likely I will lose vision in 1, 5, 10 years? Like I said, I know it's impossible to say for sure but I want to prepare now so I can still work if it's highly likely I lose central vision while I'm still at the height of my career.
I have grieved a bit about it but I'm starting to figure out what I should do now. I'm a software engineer and my vision is still good enough that increasing font size works. I'm trying to figure out if I should start learning accessibility tools now (screen reader) while I still have my central vision.
The hardest part is knowing when, and I know none of you can answer that because it varies so much. I've tried to find progression estimates but it's hard for me to find anything useful. Is it likely I will lose vision in 1, 5, 10 years? Like I said, I know it's impossible to say for sure but I want to prepare now so I can still work if it's highly likely I lose central vision while I'm still at the height of my career.
matt_may 2 points 5y ago
I found out at 25 and worked in IT until 40. As far as timetable, no one knows. The honest doctors will admit that. Best of luck!
refrigagator [OP] 1 points 5y ago
Thanks for the response, just curious did you quit working IT because you had to / couldn't see anymore? If so, did you transition your career to something more suitable?
matt_may 2 points 5y ago
I coasted a few years as a manger on my SME knowledge. In the end, there were too many projects to keep up. I developed an edema as a side effect of RP so when I'd go to work I didn't know if my eyes would focus. My doctors told me to prepare and I went out on disability. Which lead to a 3 year fight with my employers insurance company because they didn't understand RP. My more stable job as been parent. It's been five years. I still make enogh to pay the bills and I went back to college. I'm less stressed.
refrigagator [OP] 1 points 5y ago
Thanks for sharing, it's helpful to hear others making it ok. Right now I'm the sole provider for 3 kids and wife but my wife started college again when this all started.
matt_may 1 points 5y ago
Be sure to get as much disability insurance as you can. I was also able to get mortgage disability insurance.
KillerLag 1 points 5y ago
Nothing wrong with learning new skills if you can right now, it would be easier for you later on. There is a 60 day trial for ZoomText if you want to give it a try and see.
Avastin? Not Lucentis? Lucentis is significantly more expensive than Avastin, but it is also the FDA approved treatment. Unfortunately, there have not been any large studies that show which one (if either) is more effective.
http://www.allaboutvision.com/conditions/lucentis-vs-avastin.htm
"The editorial noted that Lucentis costs more than $2,000 per treatment, while Avastin costs less than $150 per treatment. This price discrepancy could be highly significant for people who have limited or no health insurance coverage."
Get an Amsler grid (you can easily find one online and print it out) and put it on your fridge, or somewhere you pass by at least once a day. Check every day to see if there are any variations of the lines, and mark them. That way, you can track if there is a significant change.
Avastin? Not Lucentis? Lucentis is significantly more expensive than Avastin, but it is also the FDA approved treatment. Unfortunately, there have not been any large studies that show which one (if either) is more effective.
http://www.allaboutvision.com/conditions/lucentis-vs-avastin.htm
"The editorial noted that Lucentis costs more than $2,000 per treatment, while Avastin costs less than $150 per treatment. This price discrepancy could be highly significant for people who have limited or no health insurance coverage."
Get an Amsler grid (you can easily find one online and print it out) and put it on your fridge, or somewhere you pass by at least once a day. Check every day to see if there are any variations of the lines, and mark them. That way, you can track if there is a significant change.
refrigagator [OP] 1 points 5y ago
> ZoomText
Thanks, I'll check this out
Thanks, I'll check this out
refrigagator [OP] 1 points 5y ago
Thanks for the reply! Yea, avastin is typically for colon cancer treatment but it's used for AMD and significantly cheaper (it did work for me in my right eye a year ago). Also I do have an amsler grid printed to check every once in a while. I guess I'm just trying to figure out how soon it will happen (if it does) and since my income is a huge part of my families income I want to make sure I'm prepared if I'm not able to see a computer screen.
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