• 8 hours ago
A woman born with one eye and webbed hands and feet loves to wear colourful clothes so people "look at my outfit - not at me because of my disability".

Kirsty Hill, 32, was born with Fraser syndrome - a rare genetic disorder.

It caused other complications and conditions including cryptophthalmos which meant her left eye was covered over with skin.

Kirsty had countless operations as a baby to reconstruct her left eyelid as well as 40 surgeries to separate her webbed hands.

But she chose to have her left eye removed five years ago and then stitched over in December 2024 after experiencing chronic pain.

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Transcript
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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