00:00So I was born with an extremely rare syndrome called Fraser syndrome and one
00:05of the defining features I suppose you'd say of that syndrome is an eye condition
00:12called cryptophalmia and crypto basically means hidden. So you have a
00:19very underdeveloped eye that's basically covered over completely with skin and so
00:25there's no eye lid, there's no eye lashes and most crucially there's no opening
00:31for the eye. So that is what I was born with in my left eye. I was also born with
00:38the same condition in my right eye but it's affected this eye differently. I was
00:42born without eye lids so as you can see I have no reflex blinking, I have no tear
00:48ducts so I've got to put eye drops in every 10 minutes to keep my cornea moist.
00:53Over the years I've experienced a lot of chronic pain in my left eye. I don't
01:00really know why, I don't know if it was to do with the pressure of the cysts
01:04sitting on top of the eye, the straining of the eye, trying to see through the
01:10cyst and through the skin which obviously it couldn't do or whether it was a
01:14combination of the two. Eventually in 2021 I got the surgery done to remove
01:20the eye and honestly that was the best decision I could have made because
01:25immediately after the surgery I woke up and obviously I was in a lot of pain
01:30having just had surgery but I wasn't in any sort of pain that I'd been in prior
01:36to the surgery so the surgery was a success in that it got rid of my chronic
01:41pain. So then the natural progression from getting your eye removed is to try
01:48and see if you'd be able to wear a prosthetic eye. So what usually happens
01:56during this process is you wait a couple of months, you go to see an ophthalmologist
02:02who deals with prosthetics, they will take an impression of your socket then
02:09they will take a couple of weeks to hand make or machine make a prosthetic eye
02:15that's a perfect fit for you. Due to my condition, because I was obviously born
02:21without eyelids, there were no kind of structures for a prosthetic eye to sit
02:27inside my socket. What my surgeon decided to do was to try and rebuild eyelids for
02:34me using a lot of tissue from the inside of my mouth to line the socket in the
02:40hope that it would hold a prosthetic. The bottom of the prosthetic would just like
02:45pop out underneath and it's really traumatic, it's really stressful because
02:52once the eye is out I can't then just simply put it back in like anyone else
02:58would be able to. I've had about six different operations in total including
03:04getting my eye removed to try and rebuild an eye socket and eyelids for me and a few
03:10weeks ago I had another membrane graft from my mouth and I had a new prosthetic eye
03:17however unfortunately yesterday the new eye popped out again. I think historically
03:25there's only been 250 cases recorded the last time I checked and it's now I can
03:32carry on make my life best as I can with an empty socket and rock that empty
03:38socket which I will. I've decided to get my socket stitched up and have the
03:45eyelids closed over the top so that's the procedure I'm going for next week at
03:50St George's Hospital in London and I'm really not feeling at my most confident
03:56at the moment living with the socket exposed and I'm worried about infection
04:02especially in the cold weather. The cold is really irritating the socket and I'm
04:07getting a little bit of discomfort so I'm hoping the surgery will be able to fix that. I'm also hoping that I don't end up in ICU this time like I did for my
04:18last. My birthday is on the 17th so I will be spending the morning of my
04:23birthday in hospital recovering from surgery the day before so that's great. I'm a little bit apprehensive
04:30because during any of my procedures they've always got to have an ICU bed
04:34spare just in case and I'm worried that there's not going to be a spare bed so
04:41basically the reason why they're doing this surgery is that last time I had a
04:45lot of grafting taken to bulk up the eyelids but then when the prosthetic
04:51wouldn't stay in they've kind of drooped a bit so I don't know if you can see but
04:58the grafting has kind of almost turned inside out on the bottom lid so I'm
05:03hoping they can take a lot of the excess scar tissue out and then just stitch the
05:08eyelids closed. I feel like surgery that changes your appearance isn't often
05:14talked about in terms of the anxiety that it causes so whether that's the
05:19anxiety pre-surgery, you don't know what you're going to end up looking like when
05:23you wake up. Also the anxiety post-surgery, you woke up looking different and you've
05:29now got to adjust to this new way that you look and for me those changes have
05:36happened quite rapidly over the last two years so I've had a prosthetic, then I
05:43haven't, then I have, then I haven't, then I have. I've lived with conformers so a clear
05:49like plastic contact lens so you can see the socket straight through and now for
05:56my next procedure it'll be yet another adjustment but I hope it's the final
06:01adjustment and then I can take my time processing everything and getting used
06:06to the way I look.
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