Lost vision in one eye (Marfan syndrome)

dnh

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

Ami2301

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 you

Sam_Alumni

Hi @dnh

There is some information here about technology for people with vision loss here that might help. 

Sam_Alumni

You might like some of @hollytuke 's posts too! 

https://community.scope.org.uk/discussion/44944/beauty-fashion-and-sight-loss

hollytuke

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