Hey, i'm sorry to hear about that man. I have some type of juvenile macular dystrophy as well (most likely stargardts). My condition seems to be a bit different, but i do have a few pieces of advice that might be helpful. Also, are you in the US?

First, i'd like to recommend getting assistance from a state vocational assistence agency (i'm a client of the Department of Rehab). In case your vision gets worse, i'd really recommend learning how to use assistive tech (either from some place like DOR or nonprofits like the National Federation of the Blind or the Braille Institute). A few other people mentioned assistive tech options already on here. If you need a short term solution and you have a fairly new PC, you should be able to magnify by pressing the window key and the plus key. If you have an iPhone (or any other apple product), you can change the font size in the settings and enable the zoom feature (located in the in "general" under "accessibility"). It also wouldn't hurt to learn text to speech programs as a "just-in-caser."

Depending on how much your vision deteriorates, it might be helpful to get orientation and mobility training. O & M training will help you navigate the world independently and confidently (taking the bus, crossing streets, and navigating buildings,etc.). If you do get past that 20/200 acuity mark, don't be afraid to use a cane. I know that when i was newer to vision loss, i was really reluctant to use mine. But now, i've realized that identifying as a blind person out in public just makes life easier. Plus, it can be really helpful when its too sunny outside!

As far as the emotional side goes, just keep a couple things in mind- if you do lose a significant amount of vision, it'll suck for a while, but it'll be okay. It might be scary, but you'll see that life goes on and that there are still so many more beautiful things to this world. Even if you go legally blind, you can still live a totally awesome and productive life. Sometimes, you'll get frustrated by having to repeatedly explain what you can see or what you need to other people, but it'll eventually just become another part of life.

Hi there. I started losing my vision to a form of macular degeneration when I was 13 (I'm 33 now). The feeling of not knowing what is going to happen with your vision and when is terrifying. If your doctor thinks your vision will continue to deteriorate I suggest you get in contact with a low vision specialist who can help you with day to day tasks.
The biggest help for me has been Zoom Text for my work computer. I'm not sure how that would work with programming. But I use it all day at work (it's a magnification program that also corrects the resolution) without this I would have retired years ago.

You can continue to work and provide for your family even as you lose your sight. Get ahead of your disease and learn to work with the vision you have.
You'll learn to look around/through the blind spot.
I also suggest the BigFont app for your smart phone, I know it works on android. Not sure about iPhone.


This got a little rambley. Sorry about that.
Best of luck!

Did the doctor tell you what form t is? I have Stargardt's it's a retinal macular degeneration and I've been living with t for 6 years.
It really depends on what dirseasebyou have and your state of overall health. I have a YouTube channel with my experiences as life, legally blind you can check them out at:https://youtu.be/f_qUY2Hnpvg

First things first. You are right to want to prepare yourself for if you lose more vision. You’re facing a lot of uncertainty and that’s scary, but you are reaching out and you realize you have a lot you don’t know, which is a good first step. I’m both sad and happy to tell you that you might have even more to learn then you realize right now. You say, “I feel guilty that I feel this way because so many people (especially on this subreddit) have it worse.” I don’t want to be preachy, I know this is all new to you, but this kind of attitude can hurt you far more than whatever happens to your eyeballs.

Quick background about myself. I’m 25 years old. I slowly lost my sight, starting at an early age, until I lost all of it when I was 18. Once I became blind I went to two different training centers for blind adults to learn how to use computers, a cane, how to clean, etc. Thanks to my time at these training centers, and also some time later on teaching blind middle schoolers at a summer camp, I have had the opportunity to get to know dozens of blind people. Most of these people have been happy, successful, well-educated, well-adjusted individuals; however, this is not always the case of course. In my experience, the primary factor in whether or not blind people succeed and flourish is not how well their eyeballs work. I know people, like my wife, who were born blind and have more degrees and make more money than most of us, can ever hope to. I also know people with lots of vision, even 20-20 vision who are miserable, scared, and do not succeed. The main difference between such people is often attitude. Some people try and rely on their diminishing vision, long after this is no longer practical. Instead of adapting and proactively facing the challenges of blindness, they fearfully hold on to their vision, hoping it does not get “worst”.

This has become very long and rambling. My point is simply, your vision, or lack thereof, does not have to be the master of your life. You ask what can you expect? I know this question might have just been about the possible deterioration of your eyeballs, but you can expect whatever you can imagine and whatever you are willing to work for. If your sight does not get worst that’s great, you don’t have to learn anything new and you don’t have to make any adjustments in your life. If it does get worst, you can expect blindness to be annoying some of the time. That is unavoidable. Even if you learn everything, you need to learn you will have some extra limitations. You won’t be able to drive, until Google finishes its self-driving car. But you can also expect blindness to not be a great tragedy. You can expect to still be the breadwinner for your family; there are blind programmers. My wife and I both work in IT and as two blind adults, we make more money than my sighted parents ever made. You can still expect to be a great parent for your children; there are lots of great blind parents. You can expect to live a full life with rich and rewarding experiences, even if some of those experiences will be different for you because you have lost vision, they will probably not be as different for you as you might expect. When I think of the memories I created as a sighted person, and the memories I created as a blind person, I cannot tell those memories apart by how well my eyeballs were working when I made them.

Now that I have gotten past that rant, let me end with a few specifics, if I have not already lost you.

1. Check out the national federation of the Blind. https://nfb.org/ they have more resources then you can imagine, and they express the same attitude towards blindness that I have been carrying on about. Don’t have misgivings about the word “blind” in their name; the NFB is for people with all levels of vision. Like me, they use the term blind as a catch all liable, because sometimes in the visually impaired community there can be an unhealthy hierarchy of sight. The NFB has mailing lists for all kinds of groups, full of people ready to answer your questions. I believe there is a blind programmers list; I know there is a blind parent list. It also has a lot of resources that you might find educational, encouraging, and empowering.

2. Look into training if your sight gets worst. Such training could be the most difficult factor to deal with, for you and your family. You might be able to receive relatively quick and targeted training from state agencies, and such options might be adequate, and your best bet, since you are the breadwinner of your family. For example, a trainer might be able to come to your house, or there might be a nearby training facility, where you can learn how to use soft where that will allow you to continue to do your job. You might also be able to receive such training for orientation and mobility. However, I have had bad experiences with such training, and if possible, I would recommend attending something like the Louisiana Center for the Blind or the Colorado Center for the blind. These are residential centers where you would have a hard-core, comprehensive experience that teaches you all the skills you need to be blind. Such an experience, however, normally takes between six and nine months, so that might not be an option for you. Both of the centers I just mentioned are NFB centers, so you can find out more through their web site, and there are other great training centers to consider.

3. Move to a city with public transportation if you lose your license. I know this is not possible for everyone, but strongly consider it if you can no longer drive. Such a move could be another hard thing for your family, but if your wife does not have a job, and you work from home, it sounds like moving could be possible. My wife and I live in Hartford Connecticut, and having public busses makes all of the difference. We can also walk to most of the things we need, which is even better. Trust me; you don’t want to be trapped at home, dependent on your family for transportation.

4. be proactive. This is key. If your sight has a good chance of getting worst, do not wait for that to happen. You are obviously a smart young guy, and you have so many resources at your fingertips. I don’t think you would have too much trouble teaching yourself assistive technology programs that will allow you to use your computer with reduced sight, or no sight. I’m accessing my computer right now with a program called NVDA. This is a free screen reader, which you could download today and use to code, no vision needed. As someone else already mentioned, there are also lots of magnifying programs out there.

My biggest regret, when it comes to blindness, is that I was not taught the skills I was needed from a young age, even though everyone knew there was a strong chance I would lose all of my sight someday. Instead of facing reality and teaching me braille and cane travel skills, everyone pretended blindness was not in my future. I had over twenty eye surgeries by the time I was eighteen, in an attempt to make a fantasy a reality. All of that denial got me nowhere. So when I was eighteen I got the training I needed. I got busy living, went to college, met my soul mate, got married and got a job. I’m not sure if any of those things would have happened if I had not lost my sight. In other words, I can’t tell you what you can expect, that’s up to you, but I hope you can expect a lot.

If you have made it through all of this mess and you have any questions, or would just like to talk, send me a PM and we can email or Skype. I’m sorry that this has been so long.

Good luck.

My mother lost her vision due to macular degeneration... many many years ago, when she was about your age. At the time, they had no idea what was going on, so she went blind in that one eye pretty much from the get go. The other eye wasn't far behind.

So she's legally blind. Minimal vision. She hasn't been able to drive a car. The good news? She reads a kindle (large print), and is using an ipad. She's functional. Folks dont realize until she reads a menu and has to use a magnifying glass and put it up to her nose. (There's a small part that's preserved itself, why/how nobody knows.)


Working in IT, I always worried I'd inherit it. I dont know if i just got lucky, I dont have it and I'm older than she was. Lutein supplements are something I take daily btw. Eye doctor definitely tells me I have indicators that show I could get it. I always have long term disability insurance, just in case. I feel you. Don't let it get you too down - start treatment, stay aggressive, and realize its not the end of your life.