Hello! I have a rare eye disease called North Carolina Asheville Macular Dystrophy, and I'm pretty similar to you. Mine was diagnosed at kindergarten, maybe age 5? I'm legally blind in both eyes but my right is the worst of the two. And I am also heavily sun blind. I have a lot of sunglasses that I use to help with it but they don't really fix it.

I don't know your specific eye condition, but my vision is stable. Only age related degeneration is supposed to affect me (except if accidents or trauma happen kinda stuff.)

I would suggest you visit an eye specialist to get a confirmed diagnosis. That's the best way to know if your eyes are progressive.

For myself, I didn't get any aid or help from any organization until after I graduated high school. (if you're legally blind in Texas then the state will pay your tuition). I'd always had a school bus or parent to drive me places, but when I went off to college I realized I didn't know how to get around in sunlight, so I went to a training facility for a few months to learn how to use a cane. Since then I graduated from University, and have been trying to find a job.

If you're worried about progressive blindness I would recommend getting in contact with your state disability office and a therapist. Being disabled is a bitch so it's good to get training and a support system in place.

Sun blindness tips I recommend are
* painting the right eye lense black instead of tints for comfort. Bright lights make my vision go from watercolors to just a bright yellow, so I found it's more comfy to just block out the light in my worse eye.
* Get sunglasses that go over your regular glasses. They do exist in varying degrees of tints. Try Maxiaids. They should have ones that go over regular glasses.
* You can also try different color tints. Brown/Amber did not work nearly as well as black tints for me. But they have all kinds.
* Use a hat when possible (I don't bc I hate hats but they do help).
* Get glasses with thick or wide sides to it. The part that goes from the lenses to over the ear. If it's just small wire frame style it doesn't block out any light. But if it's a style where the frame tappers then it will block out more light from your peripheral vision. Most of the time the light sensitive is bc of peripheral (from what I've been told).
* tell people you have issues with bright lights. This usually let's them know so they can seat you better at restaurants, or they will lead you to shaded places instead of direct sun. You might get a few questions but most blind ppl get questions anyway tbh. (and you're allowed to call yourself blind if you want. If you can't correct your vision to average then you're one of us. You don't have to use the term if you don't want to either. I went like 19 years before I started calling myself blind)
* replace regular lights with hue lights. And get dimmer switches to go with it. This age of tech allows you the best ways to control the lightning in your home. If you do better in white light? You can set it to that. Red? Blue? Yellow? All customizable.

Also. Try to learn how to cook right now if you don't already know. Like on YouTube, look up how to hold a knife like a chef, how to work an oven, how to sharpen knives etc. First, it's a life skill and second, if your vision is progressive then you should try to learn now. You don't have to but it's easier to learn with visuals.

If you have more questions you can msg me directly too. Hope this helped.

I've heard of it happening but it is very rare.

If you Google "juvenile macular degeneration" you might be able to find an online support group.

We touched on it a bit when my eye doctor was explaining that I was being diagnosed with Doyne Honeycomb Macular Degeneration, which also a rare, genetic MD that starts unusually early. I was 30 then, I'd likely had the drusen building for five to ten years by that point.

I do t have much advice because right now my vision is still quite good, but I can offer virtual hugs.

I have the same thing in my right eye.
I stumble on things and sometimes i cant see little things
Im afraid im gonna lose my licence soon..
Its so scary and the real thing is ny biggest wish ia to see like normal people even just for one day only

If you are in the United States, each county or region has a "Blind Association" or equivalent. Contact them for more information and help.

Best wishes.