Thank you for humiliating All the Blind in your post. That was very nice. your disease does not have to mean that you become completely blind. Try to find a way to adapt. I think most of us have a dignified life.

I suggest you watch the YouTube channel The Blind Life (Sam Seavey). Awesome guy with Stargardts who specializes in tech for the vision impaired. He looks like a happy guy with a family.

Also Two Blind Brothers. Also affected by Stargartds. They own a business and are inspiring dudes.

All folks I would love as friends!

Well guess you've figured out our secret, we all do nothing, just listen to audiobooos and talk about them with each other… I mean guess my kid must not be real, thanks for pointing that out, I’ll tell her that and ask her to stop being so darn cute and messy and loud and wonderful. So I also do not cook I guess? What about my other hobbies, like piano, magic the gathering, watching anime, etc?

Like really, you're being a bit extreme about this, sure it sucks at first, and a bunch of times after too, not going to pretend it doesn’t, but it's really not even close to as bad as I would've assumed before I lost my sight in a random home invasion in early 2020 just after I turned 32. I got no time to plan/prepare for going blind, had to either accept it and deal or give up like you seem to be doing. But here’s the difference, you get time to adapt, learn to make the best of it, and plan/prepare.

Darnnit! Why did you have to spill my beans man! I was faking all the stuff I said on this account, dude! I am just a miserable no one after all! Thanks for pointing out and displaying my whole fricking life! Boooooooohoooooooo! Booooooooooohoooo! Whooooooooooooohooooooooo oooooooooooo whooooooohooooo oooooooo *a river of tears collect around my room until there’s a flood* and you can still here woooooooooooohoooooooo whooooooooooo oooooooooo whoooooooooohoooooo




But seriously if you’re going to have a rotten attitude you’re not going to get anywhere.

Do you want help or an argument?

Just because blindness ends doesn’t mean your life ends.

You can still play games. You can still read books. You can still work.


You can still work and support your family. Travel the world. Adopt 5 children and raise them. Whatever you want. You just have to adapt and your whole life is stil ahead of ya! Go after it.

It’s okay to feel the way you are right now. We have all gone through this same moment you are having, but we learn to adapt and live a happy life, there will always be moments when you feel defeated but we all know that you can bounce back from it. The stargardts Community is here to support you and show you at we can get through it together

Blindfolding is not what it's like to be blind. I get your anger at life but maybe you should start by understanding the actual problems you'll be facing. You're going to lose your central vision which sucks a lot but it's not the same as pitch black darkness. You'll still have peripheral vision with which you can still do a ton. And that includes watching Netflix and seeing what's going on. Besides, tens of millions of people are blind and hundreds of millions are visually impaired, it's not just you. I don't like peptalk either. I wish we could all just get new eyeballs or visual cortices and bond with eachother about what we had experienced once instead of every day. But in the meanwhile you are going to have to choose wheter you're going to overcome it or whether you're going to wither away. But I'll say this, our biggest saboteurs are in our head. Mindset is everything. Many have absolutely thrived despite being more blind than you'll probably become. You could be one of them if you don't just give up.

Yes it sucks to get a diagnosis, of course it does and there will be adjustments in life and in your head but it doesn't mean life stops. My daughter has won nationwide art competitions, she games, blind people marry, have kids, travel the world (one deafblind man travels the world alone, watch the paralympics and tell me these athletes are less capable than you.

It's OK to feel sad and experience grief at the loss of what you thought your life plan was but you need to shake it off.

I know a man in his 50s who rapidly lost his sight over the last 4 years. He refuses to adjust. Sits in his house all day moping, refuses to learn to adapt, still has his parents drop up twice a day with food for him. He won't learn O&M, does the whole "woe is me" routine. It's depressing and draining o be around. That us the road you're on and with that attitude yes you won't have kids, a partner, friends or a job.

Alriiiiiight brother so I'm going to comment and what you choose to do with the information is up to you.

You're a young cat, I think you said 15? Well, I'm 27 with severe vision loss and it is fading. I've had bad vision all of my life, but not like this. So it has been a bit of an adjustment. The way I do things had to be adjusted. There's no way around it. I'm using a cane in public so I can find curbs easier. I was accepted into help with my states department for the blind to help with home modification and job searches.

The way you were living is going to change. You can mourn that, but if you focus on the bad your life is going to suck. And guess what, that's the case with ANYTHING. If I focused on the down sides of my children's autism diagnosis', I wouldn't be able to enjoy the beauty in them. Screw that.

This isn't a death sentence. It's a modification in your life. I played video games too, still do but on a smaller scale (not a youngin anymore and have responsibilities lol). Eventually that won't really be an option either. And that's ok. I'm going to transition into more tabletop games like DnD. Currently I've been looking into more accessibility options on some games and some you'll find, some you won't. You are young, you'll have a whole lot of other hobbies, even if you were old this would be the case.

I have four kids, three are autistic. It would be easy for me to say "how the hell am I going to take care of my children with my vision loss?? This is impossible!!!" Instead I'm learning how to do it every day and I'm excited for it.

Does vision loss suck? Yea. This is a vision oriented world. You have to make your own way. But congratulations on not being a boring, plain cookie cutter person out there.

Don't think of it as end game. Think of it as, this is a new level. Things will be different. But you got it. You'll climb that mountain, and then you'll climb another one.

Grieve it and move on. Because if you don't, your life is not going to be fun. And that's not even just with blindness. Could be you had a heartbreak, your parent/sibling died. You can wallow in it, choose to be miserable, and hate your life.

Or, you can choose to be happy. And I choose to be happy. I don't know how much time I have on this earth, but I'm going to enjoy every bit of it while I'm here. I know you're young. But it is far from the end. You write your own story that other people in your life will read. Make it a good one. You'll look back on this one day and laugh at how incapable you thought you would be.

You got this. If not now, you will. And remember that. If you need to reach out, please do. I always respond to messages. Also, look into your states division for the blind so you can start getting services. They will be able to help you get started in your journey.

If I don't hear from you again, I wish you all the best.

I am sorry you have this shocking and life changing diagnosis. You are grieving for what was your expected future right now and all these feelings and thoughts are natural and they are what your brain needs to go through to help you process.

I am really expecting and hoping that your actual future life will be far more full and fulfilling than what you are expecting right now, but we have all gone through times when we could only see the bleak, that’s natural.

I second what some have said about watching The Blind Life on Youtube- that guy is such an inspiration to me and gives so much positive and useful advice. Also check out Pete Gustin who is the blind surfer, he also has Stargardts and, though he has a particular character, there’s no mistaking that he has really embraced life once he came to some peace with his diagnosis.

I myself have retinitis pigmentosa, which affected peripheral vision mainly first, and my understanding is that Stargardts affects central vision mainly first. I have just been registered blind (I’m in the U.K) and I’m getting used to living with a whole load of adaptations and aids, including training with the long white cane. I had times of feeling like you and feeling life would not be worth living once I became blind, and even a few months ago I never thought I would get through the hurdle of using a cane- but now my life is so much easier with the cane and with the adaptations. Honestly, allow yourself these feelings and give yourself this time, but watch negative automatic thoughts which can easily spiral. Now I am accepting things better, my mental health is far better and I’m enjoying life- I’m adventuring, enjoying holidays, still working in a job I love, have a loving partner and family. I was diagnosed at 19 and now I’m 44. I know my story is not yours and everyone is very different, but you are not alone, I wish you peace and I am so sorry you are going through the anger and grief stage right now, you may go through it time and time again, but keep going and you will be stronger than you think and you will always still be you, you will carve out a life you love and you will be worthwhile and fulfilled. Don’t let the dark thoughts consume and reach out for help from others as well as on the internet as you have- you have already shown your spirit by just writing it exactly as you feel it.

Instead of justifiably tearing you a new one, I’m going to say that I myself only have light perception. I play Stardew valley, Hades, make music, stream to twitch, go to University, have traveled abroad, and have many friends and a partner. Blindness is not an end. I hope that you can come to understand that, but in the meantime perhaps try to be nicer to these people. We are willing and able to help, but this is not the way to go about getting that help.

Before you give me another angry reply, think about why people here are so upset. Losing your vision is horrible. It happened to me half a decade ago, and I was in the same position that you find yourself in right now. It is a grieving process, and it will take time and effort, and emotional support to get through it. Nobody is blaming you for being distraught. What we are upset about is your post itself. I don’t blame you for thinking that you can’t do a lot of the things that you used to be able to do. A lot of that is to blame on the ablist attitude of society as a whole. I will not sugarcoat it for you. Blindness puts up a lot of barriers. Some of them can be surmounted with effort. Some of them cannot. What I, and probably a lot of other people here, are upset about is that you would consider suicide a viable option just because of this. We get mistreated enough as it is. We don’t need that on our home turf. I would implore you to reflect on that and consider why implying somebody should kill themselves wouldn’t be taken very well, especially when countries like Canada make state assisted suicide more accessible than actual accessibility, basically implying they would rather have us dead then help us to live our lives to the fullest potential. I will reiterate what I said at the top of my post. Blindness is not an end. I can still do a ton of stuff beyond listening to audiobooks. In fact, there is an entire community of blind gamers who stream on twitch. They are a wonderful bunch of people. This is not an attack. This is not a put down. This is just another silly little human on the Internet telling you that it’s not the end. This is a life-changing event. There’s no way around that, and I’m sorry that you find yourself in that event, but your goal now is to make the most of it because that’s all us silly little humans can do. We take the things around us and try to make something cool.

You have a difficult diagnosis, and it’s especially hard to take at your age. You’re in a small minority of people with your diagnosis, but a small percentage of a huge number—the population of the entire world—is a huge number of people.

r/Blind is here for the long term. You can be angry and sad here. There will always be someone here for you, but you may not always get the feedback you want. Some of the replies may make more sense later on.

In the meantime, perhaps we could spend some time discussing what you want to do in the military and why. That can wait, though, if you’d prefer. No hurry.

You are normal. You will remain normal. Blind people are normal. You won’t get along with all blind people equally well because you won’t get along with all people equally well.

Many of us are long past our teen years, and some of us have or have had teenage children. So we have some understanding of what you’re going through.

Disclosure about me: I’m sighted, but I have strabismus (non-straight eyes) and I’ve been stereoblind my whole life. I have a little hearing loss. For no reason other than genetics and who knows what else I’ve only experienced the sensor impairment appetizer portion. But I will not have my vision “fixed” because it turns out to be useful to my work.

And my work, and that of my team, is making assistive tech for people with vision impairments. Some of that tech may be useful to you in the years ahead.

To wrap up what I mentioned before: there will be someone here in r/Blind for you. Not always on short notice. Not always the person you’d prefer. But someone.

What games do you like?
What books?

It sounds like you're a bit overwhelmed with the bad news. It is natural. You may want to take a few days until you have time to process your emotions and think about what you want to do going forward.

There are rehabilitation programs to help, and other options.

My best friend has Stargardt disease. It took her decades to get diagnosed. It wasn’t something she wanted to hear, but at least she knew why she couldn’t read anymore and that it wasn’t because she was lazy. She was never an artist before but she has taken up painting and loves it. She wasn’t much of a cook, but has figured out ways to cook on her own, using YouTube and other resources. She still loves to go to the bar with friends and gamble at the casino. I think one of her biggest challenges has been that people don’t understand or believe that she has very, very low sight. Not understanding, people have thought she’s lying, stuck-up or ignoring them.

It seems like you’re still getting used to the reality that’s coming your way. As you sit with it, you’ll find ways to handle situations that seem alien and frightening. Think about therapy to help you come to terms with what’s happening in your life. Are you near any resources geared toward supporting blind or LV people? Start thinking in those directions, because while I know you feel overwhelmed by your diagnosis, I hope you realize that this feeling will pass and there are lots of small ways you can prepare your life for dealing with vision loss. This isn’t insurmountable. You can do this. Get a white cane and practice hitting shins.

To receive a diagnosis like yours is never easy, and I'm so sorry that you will have to live with this now. Life isn't fair, and unfortunately you lost this round of the genetic lottery.

Your life is far from over. From your post history I'm presumptuously guessing you're somewhere in your early 20s, if that. Yes, vision impairment sucks a lot, but I promise you will be able to adapt and enjoy life all the same. In the meantime, I'd recommend you wear sunglasses when you can outside to slow the onset of the vision loss. Also, if you have the means, I'd recommend looking into finding a therapist - one with experience in vision impalement, preferably.

Take a deep breath. It will be okay. I do not mean you won't go blind. I mean you are a human and humans adapt.

I am currently going blind. One eye down. One to go! You can slowly start adjusting. You don't have to do it overnight.

My favorite things are reading, comic books, and gaming. I bought my first house by using my comic book as a down-payment. I've been asking around and there are ways you can still game. Though I am still discovering them. Comic books, I am paying someone to like read to me the one I love most. But I have also found some read to you on YouTube. Audiobooks? I work at the library. We have tons of audiobooks and most are e-audiobooks. I can now sit and listen to books I love while doing something else.

You aren't the first person to ever go blind. We are a community. We stand on those who came before us to make each person have a better experience.

I'll be frank. When I first found out I was going blind, I panicked too. I had just gone blind, my mom got diagnosed with her stage 4 cancer spreading, and it looks like my dad had started going into dementia. I had my ass baker-acted. I do not recommend that because they did nothing. It probably didn't help that it was during a hurricane.

This is my advice. Start counseling, not necessarily medication, but counseling. You are losing one of your 5 senses. There is a grieving process. Secondly, get in contact with a place like the Lighthouse of the blind. They can give you peer counseling at the least. They can also help you learn to adapt.

You might want to back off on your own negative comments. It hurts you, but also might come off as being negative towards people who are blind. We're a community and need to stick together. There are enough people out there who want to see us fail without us being negative to each other.

You can live through it. It IS a big change. You WILL be okay. Please get some help. Reach out. Heck, you can DM me if you need me. I feel I barely know about being blind. But this isn't my first time getting a medical condition that negatively impacted my life. Good luck. We believe in you!

I know, but I also just don't want to believe I have Stargardt, I just got misdiagnosed by the doctor who did so many tests or it's just a fucking dream, at least I feel like I'm in a dream since the diagnosis, so weak doing nothing. I hope I'm not going to be that guy but I'm just scared I have no one to talk and I don't mean people on the internet or my caretakers I mean someone who's actually there for me like family or actual friends

But there is, it's on you, there is support, help, role models, mentors, it's up to you to learn, listen, adapt.

The man i used as an example is stubbornly digging his heels in. He is been given so many opportunities to socialise, learn, etc and he's not, that's not the vision that's his outlook

My wife has Stargardt's, and she is the most wonderful person everyone in her life knows. People keep saying it about her, and not only because she is blind. All our friends agree that she is the most badass person in the whole group. For you to have an idea, she is graduating a Master's Degree at UCL (yes... that UCL) and just got hired for this amazing job where she will work with world-sized organizations such as the UN and other major players. We came from Brazil without ANYTHING waiting here for us, and now she is doing way waaaaay better than her seeing colleagues.

If you need to talk with someone who understands exactly what you are going through, DM me and I can put you in contact with her.

Hi! So sorry about your diagnosis... I have Stargardts too and thought I could answer some of your questions.

To begin with, yes, it is that rare. Usually caused due to a specific mutation in the genes (ABCA4), this can be confirmed with a blood test.

The disease (also called SGD) affects the centre portion of the retina (macula) to degenerate. Over time it is going to be difficult to see details in things, read, and identify faces. However, it DOES NOT lead to complete blindness.

You can expect:
* Deteriorating vision over the next few DECADES. The deterioration is NOT fast and you'll see significant changes in 10+ years.

* Changes in vision depending on your stress levels or the weather. Example, the more the stress the blurrier the vision and more bright or extremely cloudy days can make it hard to focus too. So it's a day to day adaptation, can get very frustrating sometimes, but it can be managed.

* Difficulty reading and identifying faces, or seeing details in things. You can use VISION AIDS, like magnifiers to read, wrote, and draw. You can also switch to safe digital mediums.

* Photosensitivity. Since cells in retina are less now and the amount of light around you is still the same, you might feel more strain and pain in eyes. May also lead to migraines. You should take ample breaks from screen/reading, get enough sleep, and use cold compress if your eyes are burning up.

* Different social life. No one told me this so I just want to share, I lost a lot of friends right before my diagnosis as I couldn't see them approaching me or waving at me from accross the street and they assumed I was being rude. It all made sense after my diagnosis but I had already lost many friends... So if you're having trouble navigating social situations and you're not comfortable sharing your diagnosis, I suggest you start therapy with a person who specialises in working with disabilities.

* You'll have to eventually give up driving.

* This disease WILL unfortunately dictate your career (in a small way, but it will)

Also:
* Avoid vitamin A rich food and all synthesised forms of vitamin A. So please check foods like milk/cereal etc when you buy. Make sure they are not fortified with vitamin A. Same with multivitamins, take 4 different tablets of B,C,D, and E I'd needed, avoid A.

* Rest your eyes - use blue light filters, get tinted glasses, use dark mode

* Regular checkups are important, usually once or twice a year is enough. Get vision aif if needed.

* Get disability certificate asap.

SGD currently has no cure and research is on its way. Be patient. It's as tough as it gets, but it's not the end of the world. You will survive and you will thrive!

More power to you and wishing you health!

Do DM if you wanna connect and know more.

grief the loss you're going through and get therapy