I am 23 and visually impaired from a rare eye disease called Cone Dystrophy. The cones in my eyes are dying (Cones are responsible for central vision- detail and color.) There is no cure and glasses do not help me. My disease has progressed greatly in the past year though I have had it my whole life and was unaware. I was always told I just had poor vision and was colorblind. I never imagined it would be a rare disease. I am very sensitive to light. I can't go into daylight without sunglasses, and I have the brightness on my devices all the way down. I can't read or see details on anything unless it is a few inches from my eyes. Colors give me a lot of problems, especially when they are bright. For example, I can't see what I text people in iMessage because it is white text with a blue background. All of my devices are in black and white or in night time mode because it's the only way I can see text. I also always see (the only way I can describe it-) static. Say I am looking at a photo of a cat. I see a film of black moving tv looking static on top of that cat. I see the static when I close my eyes as well. I struggle with depression because of this. I can not legally drive, and there is no help, just adaption. I feel useless. It's very frustrating, especially with video games being my passion. My only hope, the only thing that keeps my chin up is technology. Right now I can see more than I should because of the features on my phone. In the future, maybe there will be cybernetic eyes, or something of that sort... until then I have to keep my sunglasses on and be thankful for the little vision I have left.

I'm legally blind from a disease called visual snow, but I may go totally blind. I'm considered patient zero because I'm the only person to be effected like this. I see this constant thick layer of static, get chronic migraines, and have extreme light sensitivity. It can be incredibly painful. There's around 6,000 to 10,000 people effected, but for a vast majority it's only a mild annoyance. For a minority, it impairs their vision, although I am yet to meet someone who has lost as much vision as I have. There's no cure or treatment, and doctors are just now starting to recognize it. I've had every brain scan and blood test you can possibly imagine, with nothing out of the norm showing up. The only evidence we have for something happening to my nerves is the lining of my left optic nerve is 10 microns thinner than it was before this all happened in 2015. Other than that, I'm a completely normal and healthy 17 year old. As I said before, I may go totally blind at some point, but we really have no way of getting me a timeline of events. I've made peace with myself and my lot in life, so I'm just going with the flow now

Hello there! I'm partially blind probably because of Stargardt's disease (not entirely sure, I still haven't done the genetic testing yet. The signs do point towards Stargardt's though). Stargardt's is a genetic disease that affects about one in ten thousand people. It causes the macula (the part of the retina responsible for fine central vision) to deteriorate.

I was totally sighted until about three years ago. Over the course of a few months, my vision began to blur till it stabilized at around 20/400. Now, I have reduced acuity and moderate light sensitivity. Also, I constantly see neon lights. I use a cane now for identification purposes, but I can walk without it.

It was tough at first, especially at school, but my district thankfully had a pretty good VI program that helped me transition to "blindish-ness."

I was diagnosed with adult onset vitelliform macular dystrophy about three years ago. It took them a very long time to figure out what it was. There were a lot of tests and multiple exams by many doctors. A condition so rare, that they don't bother to study it. My arrival at the eye clinic will bring every opthamology resident running to stare into the slit lamps at my retina and the OCTs at the behest of the attending, since they may not see it again for a very long time.

I spent the first year having monthly eye shots (very traumatic), but since I am not bleeding into my eyes anymore or forming new choroids, they have stopped doing that, as I was developing retinal atrophy. I am 20/300 in one eye and 20/350 in the other.

It's been a tough haul, mostly because I am older and the adjustment has been exceedingly difficult for me. I resisted the cane training for a very long time, because I thought that it would put a target on my back, since I was pinned up against a work truck and groped when I told someone that I was giving directions to. However, getting into the support center and group support was great. One of the trainers that works there that I knew before this happened, told me his cane was not a target, it was a weapon. I started training right after that.

The biggest challenge was the day I discovered I could no longer read a book, even with glasses. I was suicidal. It was very difficult. Since then, I am kindled up (an unexpected gift from a total stranger I met at the bus stop who had gotten a new tablet) and the large print has enabled me to read.

I have done my tech training, and did much better than I expected to. Mobility training was a giant challenge. Travel training is ongoing, since they just changed all of the bus routes in my town, so I had to start from scratch.

It's rough some days, learning how to do things all over again. However, I did go to culinary school years ago and adjusting to cooking was easy. So easy, that I now volunteer at the support center teaching safe and healthy cooking classes. Knife skills are second nature still, and we have a lot of new people coming in with diabetic retinopathy that need the help.

I was born with Glaucoma but that's not the reason I'm losing vision now. I've got all sorts of problems, from nystagmus to myopia to cataracts. I have IOL implants, drainage tubes and my left eye is pretty much a lost cause with a damaged cornea. But that's not the reason I'm losing sight either. I had a retinal detachment about 3 years ago and that one was repaired without a hitch. I than had one about 6 months ago and it didn't go so well, and now I'm losing vision due to epiretinal tissue that's formed due to scarring from all the sutrgeries I've had. Doctors are wary about removing it because of how much trauma my eye has already been through.



I have 20/400 vision according to an eye chart but I see uneven static in my vision and there are blurry spots where macular pucker has formed. Everything looks like it's covered with a slightly cloudy film and there are distortions all over and colors don't look quite right either.




Ironically my eye pressure is at the lowest it's ever been, around 6-10mmHg.








So I dunno if that counts as a rare disease, but certainly a rare situation.







I should also mention that I'm only 20, and it's gotten bad enough that I can no longer read paper, struggle to read displays and can't play videogames.

On top of early-onset Fuchs, I'm currently trying to pin down what looks like an autoimmune issue that causes leaking blood vessels in the choroid and retina, plus growing new blood vessels where they aren't supposed to grow. For the last year I've only been able to read out of one eye, and I gave up night driving two years ago. I will likely have to go on the same kinds of immunosuppressants that you get after getting an organ transplant, so that'll be fun. /s Not having to get more injections in the eye would be nice, though...

Just want to bounce in from nowhere and say that I am really impressed by you all.

Thanks man. They'll fix it all one day

Hi all!
I don't exactly have a rare disease but I had cataract in both eyes since birth which severely impaired my vision. In 2015 I suffered from retinal detachment (happens randomly to 1 in 10000 people) in my right eye. I didn't even realize that my retina was starting to detach until it was too late, I started seeing black dots but shrugged it off since it has happened before. Fast forward two years later, it's 2017 and my left eye has very limited vision and I'm legally blind in my right eye. Spectacles significantly improve vision in the left eye and barely allow me to read, play video games etc. I used to play sports before 2015 but can't anymore. Somehow I manage to drive around town like travelling to college or doing chores etc. I guess I should be grateful for whatever vision I have left. On the bright side my doctors say it can't get any worse now. Let's hope the future has something good for all of us

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I suffer from Leber's Congenital Amaurosis. I am not sure exactly how rare it is, but Wikipedia claims it is rare, so I guess it is rare enough. I had reasonable vision during the day time during high school and my first few years at university. About four years ago my dominant eye which had approximately 30/60 vision started making everything I focus on wobble. I am not exactly sure why this started happening. The doctor I spoke to about it did not explain it very well, however, it is a symptom associated with my condition. It was just distracting at first, but when I went to the doctor last year my dominant eye's vision had deteriorated to 1/60.

My other eye could never see very well, When I lost my dominant eye the other one could see about 15-20/60. However, the last year or so it has deteriorated a lot. I can't really play video games anymore and I have lost all interest in even attempting to identify people, be it on TV or in person, by sight. The current dominant eye is losing its ability to properly absorb light. Everything always seems dark. Even if I crank my PC and TV's brightness to the maximum I still can't see any detail. It has reached the point where something can only be too bright or too dark. That in between spot is no longer there.

Two years ago I was a final year law student and did all my studying by using a high contrast camera on my text books and reading the text white on black. Now, however, I don't even try to read books or articles be it on paper or digital. I still read things on my phone now and then, but I can no longer use my PC without a screen reader.

I can't really navigate properly anymore, I am waiting for my country's guide dog association to contact me and let me know when I can come for training. It has become too dangerous to travel the route I do without a dog. Also, living in South Africa with any disability is a challenge. The infrastructure does not have any form of support structure, and the general attitude hear is that any help given to a disabled person is help that the person ought to be damn thankful for, because there are not really any legal obligations on anyone to assist disabled folk.

Admittedly it does suck to be on the threshold of blindness. It would kind of be a load off my back if I could just become blind and get it over with. Since I can still see a bit I still try to play video games and watch anime, but it takes me 10x longer to do so and sometimes I just abandon a game halfway through because it is too much effort to navigate through it.

I don't know anyone else with my condition. Anyone here with it? Do you guys have similar difficulties?

I have ONH (optic nerve hypoplasia) which affect about 1/10,000 people. the only things that this fun little disease give me trouble with are bright light and reading most small to medium print , I hear all the time "well you dont look blind" because i get around reasonably well this is totally infuriating , what is a blind person supposed to "look" like anyway?

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