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Lost vision in one eye (Marfan syndrome)

dnhdnh Posts: 6Member 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

Replies

  • Ami2301Ami2301 Posts: 4,987Community champion Disability Gamechanger
    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 :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Sam_ScopeSam_Scope Posts: 7,361Administrator Scope community team
    Hi @dnh

    There is some information here about technology for people with vision loss here that might help. :)
    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Posts: 7,361Administrator Scope community team
    Scope
    Senior online community officer
  • hollytukehollytuke Posts: 12Member Courageous


    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 :)

  • mikehughescqmikehughescq Posts: 3,323Member - under moderation Disability Gamechanger
    edited September 2018
    It helps to separate out certain issues. 

    So, some of your stuff is about coping with things that have happened and some is anxiety about things which have yet to happen and which might not. This is not uncommon with VIs and it’s really an issue because medical appointments can mean taking on quite complex stuff and so the questions you need to ask only occur to you much later. One of the best things you can do is go back to your surgeons etc. and go “okay, now I have a list of questions”. You can ask them about the risks to your other eye and once they realise you’re not out to get them you’ll get detailed answers.

    In terms of trips and falls this comes down to making sure that the environment you know is adapted for you and that really needs a full sensory assessment plus referrals for assistive technology and a low vision assessment. 

    When you’re outside your known environment it comes down to having a navigation cane; full training and taking your time. Most people with new VIs see canes as something which make them more vulnerable whereas the reality is that they are massively helpful and a real protection and confidence booster. You will find plenty of support once you make the invisible visible for others. Additionally, learn to plan and use accessibility support. Most venues have some kind of accessibility support and it can make sport, gigs, cinema, museums, theatre etc. a joy again. 

    I agree that registration is also a good idea but you may have to push for it. Many ophthalmologists see registration as something to be done when they’ve run out of other options and many see it as a sign of medical failure rather than something to be done routinely at the outset. 

    Finally, do what you’re doing here - talk. Talk to us here and talk to family and friends. The more you do it the easier it gets. Similarly find like-minded people. People with the same conditions. It’s a life-changing thing.
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