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Lost vision in one eye (Marfan syndrome)

dnh
Community member Posts: 6 Listener
Hi I am 34 I have marfan syndrome which is a connective tissue disorder, last year I had a retina detachment in my right eye which I had surgery on to repair. After the first surgery everything seemed to be ok then the retina detached again which then lifted off the macular.
I have since had 3 further surgeries which have finally reattached the retina back t my vision is now extremely poor I can make out light and slight movements.
I am finding it quite hard to come to terms with and have had a few trips and falls since.
One of the things I find hardest is people saying "at least you still have the other eye" it feels like they are saying it's not a big deal.
The sight in my left eye is not brilliant (-11) and I'm worried that the retina will detach in that eye too
How do others cope with sight loss and what can I do to assist in anyway?
Thank you
I have since had 3 further surgeries which have finally reattached the retina back t my vision is now extremely poor I can make out light and slight movements.
I am finding it quite hard to come to terms with and have had a few trips and falls since.
One of the things I find hardest is people saying "at least you still have the other eye" it feels like they are saying it's not a big deal.
The sight in my left eye is not brilliant (-11) and I'm worried that the retina will detach in that eye too
How do others cope with sight loss and what can I do to assist in anyway?
Thank you
Comments
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Hi @dnh
I have central vision loss so am dependant on my peripheral vision. Have you been in touch with a Low Vision Clinic? They gave me this is device which is the same as a computer mouse and it plugs into the TV. I struggle to read standard sized font so for example when I receive a letter I place the 'mouse' over the writing, then because it's got a magnifier on the base of it, it then transfers onto the TV so I can read easily. I'm hoping there are devices out there to help youDisability Gamechanger - 2019 -
Hi @dnh
There is some information here about technology for people with vision loss here that might help.Scope
Senior online community officer -
You might like some of @hollytuke 's posts too!
https://community.scope.org.uk/discussion/44944/beauty-fashion-and-sight-loss
Scope
Senior online community officer -
Thank you @Sam_Scope , @DNH I hope my posts help a bit. I'd also suggest contacting your local sight loss services/organisations to see if they can help, I'd also suggest contacting sight loss charities as well to see if they can help in any way, there's a lot of information out there. If possible, it might be worth considering whether you're able to be registered as having a visual impairment, as this can provide many benefits.I know it's hard but try and be positive, you're doing so well and the fact that you've reached out and asked for support is great, you're a fighter! I only have light perception
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