NFR - Keratoconus

[PokerMatt]

This isn't about the shamed Atomic Kitten singer.

Just wondering if anyone on here has this condition? Only about 1 in 3-5000 or so do so it's probably unlikely.. But I'm interested to know.

Was diagnosed with this recently and the next step is an op on both eyes. I'm squeamish enough about eyes as it is, so would be great if anyone here has any experiences to share.

I'm willing to open the floor up to other uncommon eye conditions as well. Basically I'm down in the dumps, worried and need someone to tell me it'll all be ok! Or something.

[Berserker]

No haven't that condition but my brother in law has just had horrible operation on his eye caused by his diabetes. They had to do something at the back of the eye ball.

[ToodlesMcToot]

Unless your eyes have something to do with religion or politics, I see no reason to remove the thread. You're amongst friends here, even if some - or even all - are virtual. Perhaps you will find a compatriot in football and condition. Might even coax a lurker out from the shadows and into posting.

Either way, I hope that you find the comfort that you need and that whichever procedure(s) you must endure go well for you Matt.

[PokerMatt]

No haven't that condition but my brother in law has just had horrible operation on his eye caused by his diabetes. They had to do something at the back of the eye ball.

Ohh goodness. That sounds a bit more invasive than what I'll go through. Hope all went well for him.

[BestOfBrede]

Hi Matt,

I've not had/got keratocanus but have had 3 eye ops when I was youngster.
I managed to stab my left eye with a compas and it ripped the retina ans became blind in that eye!
I can tell you that, although uncomfortable, they were not painful.

They weren't able to restore the sight, unfortunately as the damage was pretty bad.

But, if you are advised to have an op to save your sight, you should grab it with both hands. I definitely would take any chances when it comes to your sight!

I hope all goes well, as I'm sure it will.

[Fulham Joe]

My son has this condition, at the moment it hasn't got any worse, and obviously I'm hoping it stays that way.
I've spoken to a few people who have had eye operations, and just about everybody has told me it was no big deal, nowhere near as bad as they had imagined.
Good luck with your eye op, I'm sure it will be a doddle.

[PokerMatt]

Thanks for the kind words Toodles. It is strange you can feel like you know people when you've only seen words on the screen. But that's what's great about this place.

BOB.. what can I say? That sounds very nasty indeed and certainly has put mine in perspective.

Joe, I knew there was someone out there who had heard of it! Hopefully it goes well for your son. In my case the op is to try to preserve my sight as it is. In the case of my right eye it's pretty good so I'd be happy with that, but my left is pretty poor. It's all to hopefully put off the need for a cornea graft in the future, which doesn't sound much fun at all!

[BestOfBrede]

Deano,
I've lived since the age of 5 with only the one eye and so tis normal for me.
I've had to start wearing glasses and was none to pleased that they don't do monicles anymore!
Effectively I've had to pay for glass that I don't use!

Matt,
Very best of luck, please let us know how you get on.
Are you going to Moorfields eye hospital?

[PokerMatt]

Will do mate.

No I'm Sussex based so it will be the Queen Vic in East Grinstead. I've heard I'm in safe hands there.

[dannyboi-ffc]

Never heard of this condition but I really hope it works out ok for you mate. Don't hesitate to post anything on here, you know I think you're one of the top guys on here along with deano,  logical, Woolly, tup's, Artful Dodger and a few others. We share the same beliefs on many things!

Sorry to hear about your eye BOB, I can't imagine what it must be like to lose sight in one eye. It's the one thing I fear happening to me so fair play for coping with it. Stronger person than me, the thought of what you described makes me nervous.

[BestOfBrede]

Hi Dannyboi,
Please don't worry about me - 'twas donkeys ago and I can't remember what it is like to see from both eyes! It was a naughty child injury and very unlikely to happen to an adult, if careful!
Feel concerned more for Matt that is currently going through this trepidation, but thanks for your kind words.
:047:

[dannyboi-ffc]

Hi Dannyboi,
Please don't worry about me - 'twas donkeys ago and I can't remember what it is like to see from both eyes! It was a naughty child injury and very unlikely to happen to an adult, if careful!
Feel concerned more for Matt that is currently going through this trepidation, but thanks for your kind words.
:047:

I get concerned for all fellow FOF's. At the end of the day we are all in love with Fulham and this forum stands for FRIENDS of exactly that. I really don't see why anyone argues, I bite when someone irritates me but in the main I think of all of you as 'friends' in a weird way. I don't think that's sad is it? Im not a lonely loser behind a laptop but you all share my one true love after family, coming from south east London I don't have any friends to talk to about Fulham, im the odd one out lol. So I enjoy all of your company.

I forgive and forget..... remember? Those were the days ranting about magath.

So yes I care for all of you and your health, so make sure you protect that good eye and matt sort it out son! Your eyes are important!

[FortCollinsFulham]

Well i was certainly surprised to see this thread title.

I do in fact have keratoconus. Diagnosed at 14 and i'm 24 now, very progressed. I'm like 90 percent legally blind in my left eye (not technically 100% legally blind because i can see which direction the giant E is facing on eye tests). My doctor recommends a cornea transplant as soon as I say go (i've obviously been procrastinating, as eye surgery isnt a fun ordeal). Corneal cross linking, intacs and some other options are less invasive, but they dont work for every eye (i.e. my left eye is most likely too far gone for anything besides the cornea transplant).

England/Europe was years ahead of the states in government approval (FDA approval here in the states, no idea what the equivalent is in England) for Keratoconus treatments like intacs and cross linking and being approved by insurance when it comes to paying in the States. But i digress.

How old are you? do you wear gas permeable contacts now to improve vision of just glasses?

Small world ... Keratoconus Fulham fans unite! haha

[BestOfBrede]

Hi Dannyboi,
Please don't worry about me - 'twas donkeys ago and I can't remember what it is like to see from both eyes! It was a naughty child injury and very unlikely to happen to an adult, if careful!
Feel concerned more for Matt that is currently going through this trepidation, but thanks for your kind words.
:047:

I get concerned for all fellow FOF's. At the end of the day we are all in love with Fulham and this forum stands for FRIENDS of exactly that. I really don't see why anyone argues, I bite when someone irritates me but in the main I think of all of you as 'friends' in a weird way. I don't think that's sad is it? Im not a lonely loser behind a laptop but you all share my one true love after family, coming from south east London I don't have any friends to talk to about Fulham, im the odd one out lol. So I enjoy all of your company.

I forgive and forget..... remember? Those were the days ranting about magath.

So yes I care for all of you and your health, so make sure you protect that good eye and matt sort it out son! Your eyes are important!

"I forgive and forget..... remember? Those were the days ranting about magath"

Of course I remember -   :005:
But I thought we sorted that little indiscretion and agreed to disagree  :047:

I'm in total agreement re Fulham supporters - we agree and we disagree, but we all have the super whites at heart!

And no - it's not sad, but to some of us, slightly harder to state publicly!
Unfortunately, I'm old school and find it difficult to be open with my thoughts, sometimes!

At the end of the day - We are Super Fulham FC - that's enough for me  049:gif

[dannyboi-ffc]

Hi Dannyboi,
Please don't worry about me - 'twas donkeys ago and I can't remember what it is like to see from both eyes! It was a naughty child injury and very unlikely to happen to an adult, if careful!
Feel concerned more for Matt that is currently going through this trepidation, but thanks for your kind words.
:047:

I get concerned for all fellow FOF's. At the end of the day we are all in love with Fulham and this forum stands for FRIENDS of exactly that. I really don't see why anyone argues, I bite when someone irritates me but in the main I think of all of you as 'friends' in a weird way. I don't think that's sad is it? Im not a lonely loser behind a laptop but you all share my one true love after family, coming from south east London I don't have any friends to talk to about Fulham, im the odd one out lol. So I enjoy all of your company.

I forgive and forget..... remember? Those were the days ranting about magath.

So yes I care for all of you and your health, so make sure you protect that good eye and matt sort it out son! Your eyes are important!

"I forgive and forget..... remember? Those were the days ranting about magath"

Of course I remember -   :005:
But I thought we sorted that little indiscretion and agreed to disagree  :047:

I'm in total agreement re Fulham supporters - we agree and we disagree, but we all have the super whites at heart!

And no - it's not sad, but to some of us, slightly harder to state publicly!
Unfortunately, I'm old school and find it difficult to be open with my thoughts, sometimes!

At the end of the day - We are Super Fulham FC - that's enough for me  049:gif

Of course it was sorted, we've never had a problem since and that's how it should be. I find it easy to show emotions, I even cry when I need to. But I'm certainly not embarrassed or scared to say how I feel and how I consider each and every one of you a friend. I get not everyone is like that but I am!

At the end of the day a friend of Fulham is a friend of mine and I wish you, matt and everyone else happiness and good health (although Fulham puts an end to the latter)

[PokerMatt]

I thought there must be another on here!

The equivalent to the FDA over here is NICE and they approved cross linking over here on the NHS last year.

I'm 27, diagnosed in the summer but I've had it for a number of years before they were able to tell me what was wrong. Currently have glasses but don't wear them because my right eye does all the work anyway, as it's currently mild in that eye. Moderate to advanced I was told in the left (was told at diagnosis mild to moderate, so that was a shock) , but still plenty thick enough for cross linking, so there's no decision really. Currently get by fine, but wouldn't if my right eye gets to the point of my left.

Sorry to hear about your left eye, I know it's a rule that the earlier it starts the faster it progresses. And that's the real cruelty of the disease. How's your right? I guess you can get reasonable vision if you still have a choice to make regarding a graft? Hopefully anyway.

It's good to know another FFC fan with it. In a way that is, obviously I'd rather no one did as it can be nasty to deal with (not from my experience so far though of course).

[FortCollinsFulham]

I thought there must be another on here!

The equivalent to the FDA over here is NICE and they approved cross linking over here on the NHS last year.

I'm 27, diagnosed in the summer but I've had it for a number of years before they were able to tell me what was wrong. Currently have glasses but don't wear them because my right eye does all the work anyway, as it's currently mild in that eye. Moderate to advanced I was told in the left (was told at diagnosis mild to moderate, so that was a shock) , but still plenty thick enough for cross linking, so there's no decision really. Currently get by fine, but wouldn't if my right eye gets to the point of my left.

Sorry to hear about your left eye, I know it's a rule that the earlier it starts the faster it progresses. And that's the real cruelty of the disease. How's your right? I guess you can get reasonable vision if you still have a choice to make regarding a graft? Hopefully anyway.

It's good to know another FFC fan with it. In a way that is, obviously I'd rather no one did as it can be nasty to deal with (not from my experience so far though of course).

Yeah my left eye is a bad situation. I wear glasses, essentially only for helping my right eye since my left is so far gone. The hard contacts feel like a shard of glass in my eye so I only do glasses. But yeah, the glasses allow me to drive and function semi-normally (I drive as little as possible and never at night though).

My right eye is much better than my left but that's not saying much ... I cant recall the exact vision number but yeah. I totally depend on the right though, however bad it may be. And I certainly rely on others to drive when possible, read stuff, so on. People always chuckle at how close I hold my phone/books/menu to my face. I'm a squinting machine, which causes migraines too, an added shitty aspect to the disease.

If you can function even glasses, you must be in pretty solid shape vision wise then? Are you going to get the cross linking done soon? I'm thinking of doing the cornea transplant within a year, this summer maybe.

[PokerMatt]

Night driving has started to get a little tricky, but I'm OK with my right for that. It's a race against time now to get cxl done before it gets worse in that eye.

I'm on the list now, so hopefully in about 4 months I'll have the bad eye done, then the good one a couple of months after. I can see most of the chart with my good eye, albeit with some ghosting, which is why it has gone undiagnosed for so long. I didn't need to go to the opticians while my good eye didn't start symptoms. I should have done, but hey.

Then it'll be the case of fitting contacts if needed. I've heard how problematic they can be, have you been offered any other type of lens?

I'm guessing once you get to the point of a transplant being needed you don't have a lot choice, I can't imagine what must be going through your head about it.

[FortCollinsFulham]

Nice, you'll have to let me know how the cxl goes, I hope to do it (perhaps combined with intacs) on my right eye once my left is done.

To be perfectly honest, I'm terrified of the cornea transplant on my left but I'll be alright...just a struggle to get through with the help of the people I care about. Could be something worse like cancer or 50 years ago where we'd be screwed. At least there are options now, however unfortunate they may be.

And yeah I've tried all the different contacts, none of which worked for me personally. The full eye contacts work for a cousin of mine who has it (apparently heredity plays a role). Granted he's in his thirties and not nearly as progressed as I am. The soft outside, hard middle lens were decent and less bothersome as well, but still too annoying for me and required perfect placement. (I should remember both those lens' names but don't recall right now).

I don't want to scare you out of contacts post cxl though (if needed), as it varies by individual.