I recommend looking into a training center for the blind near you and trying to get into their classes to learn some different ways of doing g things even if you do t need it now doing the classes early can help with a confidence boost so it’s not quite as scary.

I have RP which is also a degenerative condition that can lead to blindness. I know that our diseases aren’t exactly the same, nor are any two cases of either disease, but for what it’s worth I had similar fears at your age. I’m now 42 and though my vision is certainly significantly degraded compared to when I was younger, I haven’t lost all of it and I may always retain at least some vision, even if it’s not super useful. Whether your disease will follow a similar course, take longer or progress more quickly than that, nobody can say, so the best thing to do is just keep learning about adaptive technologies that are available. The worst thing that will happen is that you will need to learn to do some things in a different way. The good news is, there’s always away. Take care

As someone who has been completely blind since birth, my perspective is a bit different. I can't speak to the transition of losing sight, but I will say that your fears are completely understandable! I can imagine you have a great deal of anxiety regarding what this transition will look like in your life, and there are a multitude of things that are relevant. I guess the biggest piece of advice I can give you though is to expose yourself to blind folks / blind content creators / blind anythings. I imagine the most helpful thing to you right now will be knowing that things will be ok? And I imagine that seeing examples of competent blind folks living their lives will help with that.

If you haven't already, get in contact with your rehabilitation agency. They should have a division for blindness of some sort, and that's how you can get more info on how to get training and maybe some funding on how to make it happen?

And of course know that you can ask this sub if you have any questions in particular!

I would recommend genetic testing for stargardta disease. I’m 39 and just found out that my vision loss is from stargardts and not MD. You are awfully young to have MD.

From my perspective as a technology trainer of the blind and visually impaired; develop and refine your touch typing skills for both laptop and standard computer keyboards. This helps when you'll learn whichever computer based assistive technology software programs. The less you have to think about where keys are, the more cognitive horsepower you can devote toward learning key commands.

What’s the roadblock for you to visit the doctor? Have you ever been seen by a retina specialist or low vision specialist? The former may have treatments to slow the progression, the latter can help you get tools to take full advantage of that vision you do have, and connect you to vocational rehabilitation who can help you with orientation training, and to organize your home safely.

My advice is to start Orientation & Mobility training ASAP, as well as perhaps Braille, and have someone in the know show you how to use the technology/apps on your smartphone that were made for the blind. I can tell you that doing things sighted and doing those same things without vision are two different worlds....

I went to the Louisiana Center for the Blind and they changed my life. Google them and call... you are not obliged to do anything if you don't want to. What I'm saying is, if you decide to go with them for your Independence Training and Life Skills, you will not be forced to do anything you don't want to, and you don't have to stay. Their adult program is a 6 month long journey that you will never regret. And it was completely free, plus, you got a nice little stipend every month as well, for expenses.

Go forth and conquer!

What’s your eye prescription?

Since you have macular degeneration at a young age, it sounds like Stargardt’s. Sam Seavey from YouTube channel The Blind Life has Stargardt’s and IMO his channel is the best blind channel on all of YouTube.

He specializes in assistive tech and I find him very genuine and inspiring.

I see later you note you have Best Disease which isn’t macular degeneration, but a form of macular dystrophy. It manifests like macular degeneration, but is a different disease. Macular dystrophy is often genetic in origin. I myself have adult-onset Vitelliform macular dystrophy which is in the same family as Best Disease, it just hits a bit later in life.

Best to you…