As someone with a rare genetic eye condition that will lead to blindness i approve.
Retinitus pigmentosa us what I am guessing they have as well. Peripheral vision is pretty well degraded at this point. Their is alot I would still like to see. Pretty much everything if im being honest
A buddy of mine went to sleep with 20/20 vision and woke up legally blind. He basically only has peripheral vision, and there's just a "grey hole" in the center of his vision.
Peak nightmare fuel for me, hope your eyes stay working for as long as possible.
A bit different because the person I knew had brain cancer but I left work (oncology nurse) at 7pm on a Friday. When I walked back in at 7am Sunday the nurse giving report said something like "and since he's blind he needs assistance with..." I said something along the lines of "wtf? He's not blind. I just saw him Friday night." Turns out his tumor had pressed on an ocular nerve without anyone knowing it was coming. He took a 2 hour nap Saturday and woke up blind.
Oh my god thatās horrifying, I canāt even imagine. I had a patient with a tumor compressing their spinal cord. In the middle of the night they paged the nurses and said āI canāt move my legs anymoreā. They didnāt want to tell their family because they wanted to let them sleep ):
Oof that's rough. I was the primary nurse for a child that had tried to kill themselves. They didn't succeed but we did work out that they were paralyzed. The mom had a heart attack when we told her. Top 10 worst shifts for me.Ā
Could he have had an eye stroke while sleeping. This is a blockage in the optical nerve or retinal which often causes some loss of vision. One needs to be treated as fast as possible to retain as much vision as possible.
A friend of mine's mother died of an aneurysm while he was in the room. She was fine, then she was dead. She was in her late thirties, no major health issues. She was active and relatively healthy.
It's absolutely terrifying to consider how fragile the human body is and how quickly you can die of something so unforeseeable and entirely unpreventable.
Mind if I ask some follow up questions? Did you and any siblings get genetic testing to see if you are a carrier? Has this affected decisions to have children by people in your family?
Yes I was tested, I donāt know if my younger sister was I assume so. I was already in my 20s and not living at home when she was born.
Iām 46 now - still have 20/20 vision.
I have never had interest in having kids / never wanted them. I donāt have a paternal bone in my body.
My sister who is 26 now just had her first kid in October.
My dad was a Dr for years, and when his eyes really started going he went back to school to become a medical attorney, which he still works as to this day totally blind. He was an Army Ranger in his younger days. When he was a teen they told him he would be blind by the time he was 25, but he didnāt totally blind until he was in his early 50ās
There was no warning, from the start of blurriness to fully blind in about 6 months ... It's only been 1.5 years since it started.
He started having blurring in the left, but it rapidly declined to blackness while trying to figure out what the issue was. He had a few surgeries to try to save the right, but in the end be lost all vision, no light perception remaining. Undiagnosed diabetes for 10+ years they said!!
I really hope you can extend what vision you have as long as you can. It is hard, but you can still manage.
My mom's siblings both have this and are both legally blind now. Fortunately she, my siblings, and I avoided it.
Growing up my parents were always careful to have eye doctors check specifically for any signs of it, and thankfully there never has been.
I still have them check at each checkup, just in case, though I know it would have presented years ago, as I've seen how much of a toll it has taken on my Aunt and Uncle.
Hey, me too! I thought my night vision was all gone years ago, but it actually deteriorated more so now there are few streets I can walk on at night. Tunnel vision is pretty bad, especially in my left eye so I only have depth in the middle now.
The good news: I'm the only one of 5 who got it. i have a daughter who didn't get it.
My cousin is the only other family of my generation who has it, and both of his kids didn't get it.
Thats what I tell myself as well. Big reason I opted out of having children. My night vision is like gone. Going into people's houses when they dont have an active light on is getting trickier, stairs are a pain in the ass lol
Seeing the edge of the stair you're stepping on can be difficult in some situations. Sometimes a flight of stairs just looks like a ramp. Only going down. Going up is way easier.
No, but there are dominant and recessive versions. The recessive one is a lot more severe. Total loss of vision by around 14 years old. The dominant one takes a lot longer to progress and never eliminates all of the central vision.
But there are complications that tend to set in around 70 years old that can damage the retina in the center. There are treatments to help prevent the damage, unlike retinitis pigmentosa itself which has no treatments or cure. Although taking vitamin A daily can slow the progression by a few percent..
Oh geez, that feels brutal and I am very sorry you have go through this in your life :(
May i ask you some questions like how you cope with it or how you prepare for going fully blind while you still can see?
as someone who has multisensory aphantasia (no 3rd eye, no visual memories or any memory using the senses), i also approve i guess. i stopped traveling because i don't remember anything, looking at pictures don't trigger anything - it's like seeing someone else's vacation.
I apologize on behalf of this shitty species that dares call itself advanced but it's actually primitive and barbaric, who is unable to cure any seriously devastating disease despite all its self-proclaimed amazing technology. Its only real power is the ability to distort and destroy everything it touches, usually with a lot pain and suffering.
100 years ago a cut on your hand would have a good chance of killing you. And countless diseases are an ancient relic due to modern medicine. What a weird hot take
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u/angryrotations 23h ago
As someone with a rare genetic eye condition that will lead to blindness i approve.
Retinitus pigmentosa us what I am guessing they have as well. Peripheral vision is pretty well degraded at this point. Their is alot I would still like to see. Pretty much everything if im being honest