Blind and Visually Impaired Community
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There is a whole maintained sub for Cortical Visual Impairment and it just seems to sit empty. Do people with CVI mostly sub here instead? Where are people with CVI connecting on Reddit? (self.Blind)
submitted by Yammy_Lyfe
I'm just curious why the crickets at r/CVIcommunity for people who have Cerebral or Cortical Visual Impairment.
And r/CVIsupportcommunity (for caregivers and educators of children with CVI)
I keep hearing it's the leading cause of vision impairment for children in developed countries, and still significantly under or misdiagnosed at that. Why does it seem so obscure online?
Just wondering as someone who is under the less severe Cerebral umbrella, why doesn't such a significant community seem to have a stronger online presence?
And r/CVIsupportcommunity (for caregivers and educators of children with CVI)
I keep hearing it's the leading cause of vision impairment for children in developed countries, and still significantly under or misdiagnosed at that. Why does it seem so obscure online?
Just wondering as someone who is under the less severe Cerebral umbrella, why doesn't such a significant community seem to have a stronger online presence?
Mamamagpie 4 points 1y ago
My vision loss is cerebral, so I guess I could go check that out. There is r/hemianopia which is also mostly empty.
My guess is if you want advice on living with vision loss you get a broader cross section here.
My guess is if you want advice on living with vision loss you get a broader cross section here.
Yammy_Lyfe [OP] 1 points 1y ago
Thanks for your perspectives and the tip about the hemianopia sub.
Personally I think I'm in a portion of the CVI population that doesn't resonante with the conversations here or on the low vision sub. I demonstrate very particular characteristics that generally seem to be understood in more detail by some others with Cerebral Visual Impairment, and sometimes even more complicated Cortical presentations.
I'm hoping one day a community may develop around it, but I was just curious why people feel it may not have.
Personally I think I'm in a portion of the CVI population that doesn't resonante with the conversations here or on the low vision sub. I demonstrate very particular characteristics that generally seem to be understood in more detail by some others with Cerebral Visual Impairment, and sometimes even more complicated Cortical presentations.
I'm hoping one day a community may develop around it, but I was just curious why people feel it may not have.
Mamamagpie 2 points 1y ago
Most of side effects of my AVM I’ve adapted to. I relearned how to read, etc. The only thing that I lost that still impaired my life is the hemianopsia. At the end August I tripped on something on my blindside and broke my ankle, I use a white cane now. Advice on using a cane can be found here, while those other communities not so much.
TechnicalPragmatist 1 points 1y ago
Because for each eye disease there is actually not a lot of people in each, some more than others. I think Ive only met one or two I think on here who has my very condition, I am not sure if any of them are totally blind either.
Mamamagpie 1 points 1y ago
I just looked at both of those subs, there isn’t much content.
My AVM, cerebral hemorrhage, brain surgery and vision loss was in 1985. I was a client of the commission for the blind and visually impaired. In the last 36 years I have found more support from the general blind community that any brain injury community.
My AVM, cerebral hemorrhage, brain surgery and vision loss was in 1985. I was a client of the commission for the blind and visually impaired. In the last 36 years I have found more support from the general blind community that any brain injury community.
Yammy_Lyfe [OP] 1 points 1y ago
Yes, that's what confuses me, very little activity and I suspect that is probably the reason why.
Thanks for your perspective on it and letting me know where you are connecting with communities.
Thanks for your perspective on it and letting me know where you are connecting with communities.
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