Today I learned I am slowly going blind.

[Phantom1]

So, over the past year or so my vision has been getting pretty bad. Light hurt my eyes, yet I could barely see in the dark. I'd see... well it's called ghosting, where I see faint double images. I could barely read text that was right in front of my face.

My glasses were useless, and contacts never worked for me.

It's mainly my right eye. If I cover my left, I literally cannot see a goddamn thing.

I caved in today at the constant nagging of my best friend to get an eye exam.

I walked in, and they sat me down, took one look at my eye and they rushed me a referal to a ophthalmologists.

The doc at the eye exam place said that glasses would never help me, and that I needed to see an expert. He knew exactly what I had.

It's called keratoconus

According to my research today it's a 'degenerative condition of the front of the eye. Keratoconus can lead to variable, complex, unstable and severe visual impairment. Its an unpredictable progressive eye condition with an unclear etiology and pathogenesis. Keratoconus is generally first diagnosed in young people, resulting in a disproportionate negative effect on their quality of life. Keratoconus is an ectasia of the cornea with an incidence in the general population of 1 to 430/2000. The cornea is the clear front window of the eye, responsible for focusing most of the light coming into the eye.'

Basically, my eye is changing shape and squishing my cornea. There are treatments, but no cure. When the time comes, I will need a cornea transplant, but even then it will start to damage the transplant.

I'm fucking terrified. In less than a year I went from near perfect vision, to not being able to read signs on the road. It's been frustrating me to no end the past year, and it's just going to get worse and worse until, sooner or later, I will be legally blind. It's such an unpredictable condition that there is really no way to know what it will truly mean. But for now, the sheer possibility that soon I will be blind...

Not being able to drive, losing my job, living off disability, whatever. This is seriously going to fuck up my life. Not to mention painful surgeries and hard contacts to try to slow the degradation down. Some of the surgeries aren't even legal in the US, so insurance won't cover them. Money is such a huge issue.

And the eventual pain as my cornea stretchesU.

It's just, this had to fucking happen right when my life was putting itself together again. I had a job I loved, got out of a dangerous relationship, was beginning to become proud of my life, and then this happens. I'm so conscious of my sight, and how BAD it is. I just can't imagine not being able to drive, play video games, hell, watch television. Just so much of my life centers around being able to see. I just.

I'm losing my mind here. I don't fucking want to live a life without eyesight. It's not worth it. It's my freedom, my life. I could lose my job, living on my own. There's no way to stop it, no way to cure, just to slow it down.

Sigh, I go to the specialist on Friday to see the extent of the KC.

 

[MCMXCIX]

I'm so sorry to hear that. Try talking with loved ones. It really helps. And besides if The disease only affects only your right eye, than you will still have vision in the left. It's not the end of the world. I'm sure you'll get through it. I know it seems bad now, but if you got through those old problems, you can get trough this one.

 

[Phantom1]

I'm so sorry to hear that. Try talking with loved ones. It really helps. And besides if The disease only affects only your right eye, than you will still have vision in the left. It's not the end of the world. I'm sure you'll get through it. I know it seems bad now, but if you got through those old problems, you can get trough this one.

It's in both eyes, one's just a lot worse than the other. It's really rare that it's ever just in one eye.

 

[Fun Size]

Oh my god I'm so sorry. This has to be one of the saddest things I have every heard. When I first learned I needed glasses I thought I had it rough, but this... this takes it to a whole level. I know you hear this everywhere, but live your life to the fullest. Like dude unless this is your life, get off PC like right now and spend time with family, friends, possibly make out with a hot girl off the street (sorry the last one was a joke, just trying to make you laugh). Um... what I feel probably can't measure up to the fear that you're feeling at this time, but I really, really hope that you'll be able to overcome this roadblock in your life.

 

[CoffeeDrink]

So, over the past year or so my vision has been getting pretty bad. Light hurt my eyes, yet I could barely see in the dark. I'd see... well it's called ghosting, where I see faint double images. I could barely read text that was right in front of my face.

My glasses were useless, and contacts never worked for me.

It's mainly my right eye. If I cover my left, I literally cannot see a goddamn thing.

I caved in today at the constant nagging of my best friend to get an eye exam.

I walked in, and they sat me down, took one look at my eye and they rushed me a referal to a ophthalmologists.

The doc at the eye exam place said that glasses would never help me, and that I needed to see an expert. He knew exactly what I had.

It's called keratoconus

According to my research today it's a 'degenerative condition of the front of the eye. Keratoconus can lead to variable, complex, unstable and severe visual impairment. Its an unpredictable progressive eye condition with an unclear etiology and pathogenesis. Keratoconus is generally first diagnosed in young people, resulting in a disproportionate negative effect on their quality of life. Keratoconus is an ectasia of the cornea with an incidence in the general population of 1 to 430/2000. The cornea is the clear front window of the eye, responsible for focusing most of the light coming into the eye.'

Basically, my eye is changing shape and squishing my cornea. There are treatments, but no cure. When the time comes, I will need a cornea transplant, but even then it will start to damage the transplant.

I'm fucking terrified. In less than a year I went from near perfect vision, to not being able to read signs on the road. It's been frustrating me to no end the past year, and it's just going to get worse and worse until, sooner or later, I will be legally blind. It's such an unpredictable condition that there is really no way to know what it will truly mean. But for now, the sheer possibility that soon I will be blind...

Not being able to drive, losing my job, living off disability, whatever. This is seriously going to fuck up my life. Not to mention painful surgeries and hard contacts to try to slow the degradation down. Some of the surgeries aren't even legal in the US, so insurance won't cover them. Money is such a huge issue.

And the eventual pain as my cornea stretchesU.

It's just, this had to fucking happen right when my life was putting itself together again. I had a job I loved, got out of a dangerous relationship, was beginning to become proud of my life, and then this happens. I'm so conscious of my sight, and how BAD it is. I just can't imagine not being able to drive, play video games, hell, watch television. Just so much of my life centers around being able to see. I just.

I'm losing my mind here. I don't fucking want to live a life without eyesight. It's not worth it. It's my freedom, my life. I could lose my job, living on my own. There's no way to stop it, no way to cure, just to slow it down.

Sigh, I go to the specialist on Friday to see the extent of the KC.

It sounds like you need a hug. Going blind at your age is a small tragedy to this community. If there is something you need to say to someone just to vent or a shoulder to lean on, you know where to find me.

 

[curiousnathan]

I am really sorry to hear that; that is terrible news. Hopefully your specialist can do something for you. I know a friend of my mother's who developed blindness. In spite of her condition she still lives a happy life -- just one with a lot more challenges.

Whatever approaches I wish you all the best! You'll pull through I'm sure. :)

 

[GreenFlame]

Oh gosh, I'm so sorry. I hope for the best for you.

Is there any particular cause or reason behind it? Or does it just happen to people?

 

[Hikamaru]

Oh god I feel so sad for you and all the suffering you'll go through due to being blind. I know my mother has issues with sight given she lost some of her vision from diabetes but your condition is something I've never heard of until now.

I do understand if you end up having to leave this forum to focus on your health issues, but I do hope everything goes well for you because we're all here thinking of you!

 

[Kanzler]

I read on wiki about this procedure called corneal collagen cross-linking that would recover and preserve some of cornea's strength and shape. It seems less invasive than a corneal transplant. It's relatively new in the United States and might be worth asking your ophthalmologist about, where it's available and whether it would help you.

sauce: https://en.wikipedia.org/wiki/Corneal_collagen_cross-linking

 

[Corvus of the Black Night]

I'm sorry about this news.

Well I can tell you this much, I don't know much about this condition personally but blindness is not an end all be all. Due to other circumstances I've spent a lot of time personally preparing for such an event if it so takes place; hopefully my management strategies can assist you as well.

What I will suggest is the following, and I would suggest at least practicing some of these immediately:

• Learn how to use a screen reader. You can download NVDA for free. If your eyesight begins to get so bad that you can't read the screen while magnified, knowing how to use a screen reader before that happens will allow you transition into that phase far gentler.
  P.S. Pokecommunity kind of sucks with screen reader use so I would suggest experimenting with some other sites first.
• Oh, and learn your keyboard shortcuts. Here's a list for Windows users. Also useful: Chrome, Firefox
• Instead of worrying about the future, practice with what you have now. While wearing a blindfold might be a bit extreme, since based on that description I don't think you will likely go fully blind, but learning how to do things without your vision is an extremely helpful regardless. Spend at least 15 minutes a day practicing. Even though your condition hasn't progressed to a completely unusable level yet, prepare for it, because the knowledge you learn is always useful.
• The "blind experience" is essentially defined by the idea that touching is close, hearing is far. Work with both senses to maximize your potential. You can practice learning how to use sound to locate passage ways and locate specific objects through practice, even if fully sighted. Learn how to identify various objects with your hands alone. Learn to type with a keyboard without looking, and learn how to use the keyboard for most mouse functions. also don't use windows 8 its sucks for accessibility
• Although you probably won't have to use a cane for some time, it's useful. In fact, I got an injury that I wouldn't have gotten if I had one! How a cane basically works is that it goes back and forth across the ground and gives tactile perception of the ground, terrain, elevation, ect. for about 4-5 feet ahead of you. If you manage to get proficient with one you can walk just as fast as you do now.
• Learn as much as you can about public transportation in your area, and work with other individuals to ensure you have transportation. I've thought a lot about this and I think personally that the loss of transportation is one of the most difficult things to deal with regarding blindness, but it IS manageable.
• Practice memorization of locations. Learn how to navigate important areas without thinking, learn relatives. Seems obvious until most people put on a blindfold...
• Get a GPS. It is an amazing tool for independence for blindness. Even if you can't drive, fully blind people can use a GPS to get around. Hell, I should proably get one...
• Know that going legally blind will not limit your ability to do most work. I would suggest getting into a line of work that includes computers, since they are usually the most accessible line of work. DO NOTE that employers love to dick around with the blind and think they can't do anything. To prepare for this, log EVERYTHING, and make sure that you are doing everything in your power to be the best employee you can. Companies will still dick around though, so be prepared.
• Do not sign up for social security until you are sure that you are unemployable. This likely will not happen in your case unless your blindness reaches completely unusable levels.
• Work with your doctor and make sure you do everything they say. Eyes are pretty fickle things after all and conditions like this can lead to worsening if you do not follow their instructions. In some conditions like glaucoma it can be difficult to work with since there are a lot of things you have to do in order to manage the condition, but your eyesight will stay preserved the longest if you follow through. I say this because I know people who slighted off and they have worse vision than people 10 years older than them with the same condition who followed all the rules.
• imho you shouldn't have to learn Braille, since you'll likely never go fully blind. However, some people find it helpful since you can use it to write notes.
• There is some technology on phones (for example, google goggles) that can read text on things like signs, or food at the groceries. Google Goggles needs an internet connection though, although I'm pretty sure there's an alternative that simply reads text. Enable accessibility on your phone and learn how to use your phone with sound.
• Remember that blindness is a wide variety of conditions. Yours is a corneal condition which is preferable because unless another thing pops up, your ability to see will still be in tact, just not very well. Blindness ranges from having 20/200 vision to complete inability to see light. Any sort of scrap of light that you can see is still useful though. My closest friend is light perceptive from birth and even he notices the benefits from just being able to see light. Another buddy of mine is in the final stages of glaucoma, can only see a little tunnel vision from one eye, but that's enough for him to be able to see his favourite MLP characters and make out some images.
• Absolutely remember that most of your fear comes from you losing things. The reality is that, as pointed out above, even having almost nothing is better than having nothing. The fear of blindness comes from thinking you'll lose everything - when in reality you're only losing some of your ability to see. I know that sounds really hard to get a grasp of, especially since people are so close to their sense of sight, but the truth is, even with very little you can do very much. And even with absolutely nothing, you can still do very much. In my escapades I have noticed there are some very annoying things you'll have to get used to (the infamous "WHERE THE FUCK DID I PUT MY DRINK OH SHIT PLEASE DON'T SPILL MY COKE" issue comes to mind) but overall these are mostly inconveniences.
• If you ever do need a cane it should be noted that most people don't know you're blind until they see one, so most stigma goes away if you don't bring it when you don't need it. A buddy of mine that used to go here with light perception (different guy) often goes out without his cane if he knows he doesn't need it because most people don't notice. However, bring it when necessary. Learn the differences between them, and know their advantages and disadvantages. Since I think that at least within the next 10 years you will likely not rely on a cane, you might want to get a folding cane so that you can put it away when you don't need it.
• Some blind communities include The Zone and audiogames.net may provide helpful personal advice with management. They can help more than I can with this simple post. Note: Don't put your gender down on the Zone, there's a weird guy who tried to hook up with every chick on the forum, everyone hates him lol. Most other people are chill though. If you need help, feel free to contact me or go on those sites. I have plenty of personal resources that can help assist you.

It might be too early to say, but I highly doubt that you will go fully blind - total blindness is usually induced by extreme burns, puncture or destruction of the structure of the eye, or, most commonly, retina destruction or detachment. Thankfully your condition affects your cornea, which, while distortions cause legal blindness, you will likely still have enough vision to do most things that you require. If you're lucky, you might not even need a cane or other assisting tools - many legally blind people cope perfectly fine without these. But please do not rely on that possibility. Prepare for the worst, because you don't know what might happen, and nor do the docs - at least if you do, you'll be ready for it. Even total blindness is manageable and honestly you can do pretty much most of the things that you can do now with proper training.

Might add more later, I gotta go to a meeting. Good luck and know that blindness isn't the end of the world, and I'm here for you.

 

[Phantom1]

^That post scares the shit out of me and I'm not touching it with a ten foot pole right now. I mean it has good advice, and thank you, but that advice I hope I NEVER HAVE TO USE EVER.

So, today I had my appointment with a cornea specialist and I got confirmation that it's in both eyes. Plus the doctor said that I was already considered legally blind in my right eye, basically I had the equivilant of 20/300 vision in that eye.

I have another appointment next week at another facility to get it all mapped out to see just how bad it is, and the actual demensions of my eyes. The rest of my eyes are fine though according to the doctor. He also informed me that my cornea has already torn at least twice in my right rye, and that that was the source of the sort of double reflection that eye gets. The refelction was light reflecting off the scar tissue. Actually it was that reflection that alerted the people around me that something was wrong. So that eye will most likely need a cornea transplant.

EDIT: I'm at work right now, but I'll take a picture at my break in the bathroom where the lights are bright enough to catch it on camera. It's a bit hard to catch it on my phone for some reason. Like I think the red eye on the camera app doesn't like it.

 

[DerpyTails]

I can understand the pain for being blind, I'm legally blind myself on the left eye, but I was born with it however, so naturally I have to wear Glasses as well.

 

[Phantom1]

I can understand the pain for being blind, I'm legally blind myself on the left eye, but I was born with it however, so naturally I have to wear Glasses as well.

I can't wear glasses. Makes it worse.

Right, I've got pics. Ignore my uniform. Took them just now, and yeah, work and stuff.

Hair's all fucked up from moving my part so my hair wasn't in my right eye so you could see it. I also don't give three fluffs how I look right now.

Big fucking image warning.

Spoiler:

Spoiler:

 

[DerpyTails]

I can't wear glasses. Makes it worse.

Right, I've got pics. Ignore my uniform. Took them just now, and yeah, work and stuff.

Hair's all fucked up from moving my part so my hair wasn't in my right eye so you could see it. I also don't give three fluffs how I look right now.

Big fucking image warning.

Spoiler:

Spoiler:

Well then, I'm sorry, I was only trying to say I have a bad left eye myself