you tube.

[Elizabeth R]

on you tube.can you go blind with keractocouns.

[longhoc]

Hi... no. At least, I've never found any proven documented cases. You can end up with a fairly severe impairment (which happens very, very rarely) -- which is usually when you end up being indicated for a graft. The graft typically gives you a pretty good degree of vision back, often more than sufficient to do anything you want to in day-to-day life apart from contact sports maybe. Sometimes it is less good than you'd wish. But as I say, I've not come across a genuine situation where someone has ended up with a total loss of vision.

Best wishes

Chris

[space_cadet]

as someone who has been legally blind due to KC id say hell yes you can go blind from KC

it really offends not to mention upsets me when people say "but you're not blind" id urge them to look up the definition of legal blindness then remember n hold in mind only 3% of blind people have no light perception.

[Andrew MacLean]

Absolutely yes you can become legally blind with Keratoconus. I was and transplants restored my sight. At least two other members of the Scottish Support Group were or have been registered blind.

Elizabeth, this is such an unusual outcome that it will never happen to the vast majority of people with KC. Don't worry about it; you are surrounded by people who understand and who want you to be well. Your doctors and contact lens specialist will each take care of the aspects of your eye care that are their responsibility. Have confidence in them.

I made a deliberate choice not to have any eye surgery until I had lost my sight (openly hoping that such a time would never come). If I had accepted surgery when it was first offered I'd probably never have needed to be registered blind.

Every good wish.

Andrew

[waltdek]

Andrew

Please put a stop to Space cadet
To me her posts are too offensive
Lizzy

[space_cadet]

Lizzy if you have a problem with my posts come to me direct, I simply explain how life is for me, sorry if my reality is not something you can associate or even empathyse with, but you have no right asking someone to police my posts, I have KC yes I have very severe and agressive KC which i hope you never have to experience but you have no right at all trying to silence me into opression as that is rude and down right unacceptable.

[harker]

I don't think there's anything offensive about what Space Cadet says, and certainly not anything so out of bounds it warrants moderation. Her tone's a little angry, sure, but she's not being personal. She just says stuff that no-one wants to hear, because they find it worrying.

Also, I think it's a little rude to publicly request someone be censured, not least because it derails the thread.

[Anne Klepacz]

Harker's right - fear of 'blindness' touches a raw nerve with all of us. And there's a common misunderstanding about what 'blind' means - for the vast majority, it's having limited sight, not none at all. And many of us know what that means by simply taking our contact lenses out. I don't know the figures for how many people with KC are registered, but at any one time it's very few. Mainly those who are waiting for a graft and have become contact lens intolerant, so their sight can't be corrected without surgery. So, like Andrew, post graft they come off the register because they now have good corrected (and sometimes even uncorrected!) vision. In a very small number of cases, a graft doesn't work out. And we have a few members in that position.
So our KC community includes a huge range of people, from those who have very mild KC and can see well with glasses, those who need lenses but can wear them all day and only have problems occasionally from abrasions or infections, those who struggle day to day with lenses and wearing time, those waiting for or recovering from grafts all the way through to those few with more intractable problems.
But wherever we are on that spectrum, I hope we can try to understand and be supportive of one another. I hope there aren't any taboo topics here (and remember there's the Let off Steam forum as well as this one) But I hope we can talk about things without getting personal or upset with individuals. If the content of a post worries you, then please PM one of the moderators. We're there to help - but we hope everyone signs up to the rules of all forums like this one where people respect one another.
Anne

[longhoc]

For me, my initial response was definitely influenced by the fact that here, on this Forum, we get all sorts of people stumbling across us in who knows what state of mind. And unlike a situation where you're with an optometrist or in clinic, there's no professional there, on hand, to go through all the details with you. If maybe 10 years ago I'd visited here and read that it was possible to go "blind" (which I define as you can't see anything at all, ever) that would have terrified me. It might have taken weeks or even months before I could speak to an optometrist -- and perhaps a year before I could speak to an ophthalmologist -- to find out a bit more.

Of course, you can go "legally blind" through Keratoconus. I'm really sorry if anyone felt slighted that I didn't represent them and their circumstances.

And as I sit here trying to type this out, I'd certainly, unhesitatingly tell anyone that I've got a pretty severe visual impairment. And pre-graft, in the left eye I was 20/100 with horrible, painful RGPs which I could half tolerate for less than about 4 hours, 20/400+ with glasses (at such point measurements mean very little, you simply can't see anything). Right eye was better but I still can't happily get more than 6 hours with RGPs. So yes, it's not pretty.

But I'm not "blind". At least not by my previous definition.

So, what's "right" and what's "wrong" in this discussion really is defined only in the opinions of the people who you're talking to.

I'm in two minds about whether this discussion is helpful or not. On the one hand, I really dislike the way that professionals skirt around the issue. It's the "outcome that dare not speak it's name" where they are concerned. They're afraid to mention the "b" word and we're probably afraid to ask. So we're stuck with these feelings of fear and anxiety and what do we do with them ? Therefore I hold not a shred of blame for anyone who comes here and says "this is <insert four letter word of your choice>. Perhaps it would be better said in "Let off Steam" though, because, and here I put out my other hand, imagine you're newly diagnosed, scouting around for information. And you Google us and wend your way to the Forum. Where you find a scary looking thread about going blind. Not good, because as I've said, you're all alone and with no ready access to support. I'd feel terrible if anyone ended up in that situation because of us -- our aims are "to help people with Keratoconus" so if we did the exact opposite that would be an epic failure on our parts.

Best wishes all

Chris

[space_cadet]

from personal experience it is very hard to get services to give appropriate care and services for KC related blindness one such conversation (altho i could draw on many)

me calling social services

"hi id like someone to come out n do a health and safety assesment of my apartment as iv just been declared legally blind n know you have a obligation to do so for me" them "um what condition do you have" me "KC" them "il call you back" they eventually rung back "but the intenet says you cant go blind from it we will have to write to your specialist for clarity" me "he has written to you to register me you will have a copy in 2 days time" them "oh" and just goes on and on, ignorance drives me nuts, delusional people drive me even madder.

Yet once more as I have said several times in my time on this forum all iv done is explain how KC is for me n hope it isnt for others btu reality tells me it is for a few.