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Blind and Visually Impaired Community

Full History - 2021 - 11 - 29 - ID#r4zd8n
4
Very important question (self.Blind)
submitted by Otherwise_Computer79
.
Did any one thats blind on here have a disease that caused them to see static and there own white blood cells in thur eye before they went blind
OldManOnFire 4 points 1y ago
I have a genetic disease called retinitus pigmentosa.

If you hold your arm straight out in front of you and make a fist then the area covered by the fist is about the same size as the area I can still see. Everything outside of it is overlaid with dark tv static. Sometimes there are white streaks that slowly move around in the static but I only see those when I'm moving around. The white streaks are kind of rare and only last a few seconds. That's a shame, really. They're quite beautiful.

Most of the time I don't notice the static. I've gotten used to it. I see it now because I'm thinking about it while writing this, but in a few more minutes I won't notice it anymore. When I step outside into the sunlight or turn on the bathroom light in the morning I really notice it.

I was declared legally blind in July but I probably met the criteria for legal blindness months before that. Nobody tested my field of vision before then. My visual acuity is still good. It's 20/25 in one eye and 20/20 in the other. I can still differentiate colors. Yellow is still my favorite because sunshine and SpongeBob. I can still read text messages on my phone. But I see the world through a drinking straw and that straw is made of dark tv static. In America there are two definitions of legal blindness; having uncorrectable vision worse than 20/200 in your better eye, or having a field of vision less than 20 degrees. Mine is about 12 degrees horizontally and 8 or 9 degrees vertically. My straw is shaped like a football, or, ironically, like a human eye.

Apparently my genetic code has a sense of humor.

To answer your question, the static isn't what I saw before I went legally blind, it's *how* I went blind. It constricted my field of vision to the point of legal blindness. It's the mechanism, not a precursor.

My vision loss isn't finished. I lose a little more light perception each week. The doctors don't know when I'll be totally blind but I'm estimating I have another year or two. The static keeps getting darker and the viewable radius keeps getting smaller. I don't expect my eyes to just shut off one day - I think things will keep getting darker and darker until there's nothing left for me to see.

I'm not a doctor but from what I was able to understand of what my doctor told me, I see static because the cells in my retina are dying. There might be other reasons besides retinitus pigmentosa for cells in the retina to die. Again, I don't want you to read too much into this because I'm absolutely not a doctor, but it might be something correctable like a vitamin deficiency. You should book an appointment with a retina specialist to find out more.
Otherwise_Computer79 [OP] 2 points 1y ago
I hate to hear that man I am so sorry...I've had something odd myself and I've been to retina specialists but sees nothing wrong I had a visual decline to -1 d but correctable with glasses new floaters and static and its driving me nuts..what were ur first symptoms of the disease did u see flashes and floaters
OldManOnFire 1 points 1y ago
The first symptom was a loss of night vision. Other people could still see in twilight that seemed like complete darkness to me. No, that's not accurate. I could see the sky, just not anything on the ground. The ground seemed completely dark to me. Phones, laptops, televisions, anything that is its own source of light - I can still see those things. But anything in the shadows is just gone.

It was a few months after I lost my night vision that I noticed the static, and a few months after I noticed the static that I started seeing the white streaks.

I had no clue I had lost my peripheral vision until my eye doctor had me put my face in a machine and told me to click the button every time I saw a blinking light. Nothing happened. She told me again to push the button whenever I saw a light. That's when I realized the test had already begun, the lights were already blinking, and I wasn't seeing shit. That's when I understood this wasn't just part of growing old.

So night vision first, peripheral vision second, static third, and white streaks last.

Finally, don't feel sorry for me. I'm good. My wife helps me every day. Our kids help me complete my blind bucket list. We're out of debt. I've seen my grandbabies, the Grand Canyon, Yellowstone, Africa, London, and all the Star Wars movies. I've seen more than my fair share of beauty already. I don't want to lose what's left of my eyesight but I have no regrets. I've been very lucky in life and I wouldn't trade places with anybody.
Otherwise_Computer79 [OP] 2 points 1y ago
I thank u buddy for ur time u truly seem like gentle man I wish I could take all this as gracefully as u have I envy u for that
OldManOnFire 1 points 1y ago
If I can help anybody else with the transition into blindness then my own experience has meaning. You're very welcome.
Otherwise_Computer79 [OP] 1 points 1y ago
And could you please tell me the first time u seen static was itvqhen it first started
Otherwise_Computer79 [OP] 1 points 1y ago
And I hate to be annoying but did it cause u to be myopic or hyperopia and did glasses ever fix it for a while and how thick was the static when u noticed it thank u
OldManOnFire 1 points 1y ago
I've worn reading glasses for about a dozen years, since my early forties. That probably has nothing to do with retinitus pigmentosa. It's just part of growing old.

Glasses help with focus but don't do anything for the darkness, the static, or the narrow field of vision. They just made it easier to read. I can't read books or magazines anymore, they're just too dark. It causes my eyes to strain and ache. I give up after half a page. I can only read computer screens and phones, and only white text on a black background. Anything else causes my eyes to ache after a few minutes.

I had to look up the definition of myopia and hyperopia. Like I mentioned, I'm not even close to being a doctor. I don't think either applies to me. I'm losing visual acuity very slowly just like most people my age do. I don't think retinitus pigmentosa is making it worse. The symptoms don't seem to overlap.

It's hard to say how thick the static was when I noticed it. People aren't really aware of the limits of their peripheral vision. You can't see your ears but you don't notice not being able to see them, either. The edges of my visual radius crept inward but I just never noticed. The static is dark enough that I can't tell where it ends and the edge of my vision lies. They just blend together. I hope that makes sense.
QuentinJamesP89 1 points 1y ago
I don't know if this is what you're describing, but something similar happens to me relatively often from the occasional vitreous hemorrhage. This is different from the everyday floaters, which I've dealt with all my life. When I have bleeding in my eye I see weird dots/haziness, and red and black. It's generally worse in the morning, presumably because the blood pools in the back of my eye in that position. In fact, there have been times when I've slept sitting up for months on end trying to get a bad one to clear so my doctor could see what was causing it (I'm still not totally sure how much that helps and if it's worth the discomfort). I've had vitrectomies, but sometimes bleeds will clear on their own, and laser is often needed on the leaking vessels.
NoClops 1 points 1y ago
I was born with congenital glaucoma but had 20/20 vision. I slowly lost my site (acuity and field at separate rates), and I went completely blind in my early 20s. There were a few instances in my teenage years when I would wake up and have fuzziness or other visual obstacles that lasted only a day or so. My doctor said that what I was seeing was dried or residual blood from something happening inside my eye.
Otherwise_Computer79 [OP] 1 points 1y ago
Did glasses ever help you
NoClops 1 points 1y ago
Yes. I wore glasses starting around the beginning of high school if I remember correctly. I remember wearing glasses into my early 20s, but by then, the lenses were super Duper thick, and I really didn’t have the field of vision to make it worth it.
bradley22 1 points 1y ago
I don’t have this, but isn’t it called a visual snow or something?
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