Lost vision in one eye (Marfan syndrome) — Scope | Disability forum
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Lost vision in one eye (Marfan syndrome)

dnh
dnh Community member Posts: 6 Listener
edited September 2018 in Sensory impairments
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

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