Patients Aniridia

4 answers


Topic of the discussion

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Hello I've never posted before, but was wondering how many others have had an eye removed. I was only 10 weeks old and was then the youngest patient to have the operation i had, my mum noticed I wouldn't open my eyes in bright light, and a lump on my right eye. Doctors found a begnin tumour behind my right eye and it was going to spread to my left eye. The only choice was to remove my  eye and all tumour to save my left eye. For years it never effected my life apart from school bully's with name calling, but I found if I popped it out its scared them off 🀣. I was known as a clumsy kid by all the family and always fell UP the stairs. It wasn't until my 30s my mum told me she never wanted the family to make a big issue of my eye so I was called clumsy, but it was because my visual perception of depth was out of sync. Now I'm 50 ive got 5 adult sons and grandkids, I still have my clumsy days usually when I'm over tired, and I Hate being in busy place with crowds as I don't see people stood on my right. I do drive and its my life saver, I just have to take extra care with judging gaps in traffic but in 30yrs ive never had an accident πŸ™ƒ. Would love to hear from others and how they think its effected their lives 

Beginning of the discussion - 09/02/2021

Living with one eye

β€’ Community manager
Posted on

@MrschaddyΒ Hello Mrschaddy, thank you for opening this discussion and sharing your experience! It sounds like you've made the best of what could have been a hard situation.Β emoticon bashfulΒ Let me tag some other members who can possibly share their experiences with you.

Hello everyone, how are you today? Have any of you also gone through an eye removal? How has it affected your daily life? Have you had to change the way you do things?

And for those who haven't, can you relate to Mrschaddy's experience? How has your eye condition impacted your life?
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Feel free to share here!

Take care,

Living with one eye

Posted on

@Mrschaddy Hello,

My condition is different to yours. I was born with only one eyesight. My right eyelid was shut and I was hospitalised to have it opened up. I cannot see very well out of my right eye and, like you, I never know who or what is on my right. 

Now my left eye has central retinal vein occlusion and I get Eylea injections every 7 weeks. I worry about my only eyesight cause it scares me if I went blind. Being born deaf doesn't help if I ever went blind in left eye. I struggle to read subtitles on the telly from a seated position. I've always worn spectacles all my life.

I admire you for getting on with your life despite your troubles. I'm learning to cope with my problems and trying to find ways to adjust to it.

Much love to you and have a blessed day xx

Living with one eye

Posted on

@Spooooky Hi there I also have reduced hearing mainly in my left ear but over the last few years I've noticed my hearing in my right isn't as good as it once was. Its strange but up until about 7yrs ago it was as if I could sense anyone or thing on my right so it never bothered me, even when my son's were young they would stand on my right pulling faces when told off an I caught them everytime haha. All 5 of them still find it hilarious to creep up to me from the right an scare the living day lights out of me. Like you subtitles are a big frustration because unless I sit in front of the TV I can't read them, I'm blind as a bat without my glasses and I know its only a matter of time before I have to give up driving and completely lose my independence, that scares more than anything especially in this pandemic because I won't use public transport. Stay strong and ask for help from your council to see if there is anything they can help with  xx

Living with one eye

Posted on

Hi, your stories are very interesting. My sight is OK in both eyes, apart from chronic uveitis, part of my ankylosing spondylitis, but my nephew's wife, age 29, has been blind in one eye from birth. She still has both eyes - but her blind eye doesn't move.  She says having just one eye doesn't hold her back at all, says its because she's never known otherwise.  She does all normal things like driving, running etc. Works in micropalantology (I can't even spell it).  She and my nephew are both crazy mountain climbers with no fear of heights or dangling off tiny ledges by their fingernails. Their videos whilst dangling have me sitting right to the back of my sofa!   She did mention lately that she recently has experienced seeing light from her dead eye, yet knows, and her specialists say,

that's impossible so she believes her brain is playing tricks.