UK Keratoconus Self-Help and Support Association

hi there,

this is very vain and nowhere near as serious as having poor vision or no vision.

nonethless, i am unfortunately quite vain so it matters to me! (blame mens magazines, tv, adverts etc. not me!)

i have very faint white scars on my eyes. this is apparently normal. to what extent will i get more scars, and more severe scars? how can i avoid this?

also, does the shape of the eye ever become so deformed that it is visibly abnormal?

ta for the help.


tim


p.s. i just joined here. i dont know much about kerataconus except that i have it and i cant see very well and i need lenses. just been reading all the stuff on the site.

i'm 24. i work in the nhs. i'm from leicester. my favourite colour is light blue. i support leicester city, despite their being c**p. i like drumming, jazz, trip-hop, electronica, dance, drum+bass and world music... and also watching sky sports for unhealthy amounts of time at a go. that's about it. look forward to chatting with ppl on here.

Tim

Welcome to the forum!

Not too sure about the scars you are referring to? Have you spoken to anyone in the Opthalmic profession about them?

How do you currently see? As in with lenses, glasses etc?

J

Tim

The scars: are these ulcers or healed ulcers? Have you observed these yourself, or have they been described by an ophthalmologist looking through a microscope?

Don't apologize for being concerned about the way you look. All of us are in the same boat.

As to cones becoming visible, you do sometimes see photographs taken side-on of KC eyes, but they are always magnified. Now that you have got to the point of wearing contact lenses people who know what to look for may notice them, but they will probably accuse you of vanity and you may find yourself in the ironic position of objecting, "nothing to do with vanity, I wear these for medical reasons"

Welcome to the forum

Andrew

Hi Tim, and welcome.

I also don't know about the white scars. Are they on the cornea (covering the black pupil and/or coloured iris) or on the sclera (the white bit)?

As for being visually deformed, I'm quite keratoconic in my right eye, but exceedingly so in my left. I'm told that the left eye does look a bit odd from the side, and when wearing the scleral lens (they look scary but are quite comfortable) I'm sometimes told that the eye with the scleral lens looks a lot larger than the other one.

But I've stopped caring, as I've started seeing.

Let's just hope your KC remains easily treatable.

Hi Tim

I'm also pretty much a Newbie. I have scarring as well and thought this was not unusual for KC sufferers. Indeed when I have my regular check ups at Moorfields it is the reason given as to why the vision, particularly in my right eye, can't be improved upon by a change of lenses. I believe we are far more susceptible to scarring.
Whilst I have had KC for over 30 years I am surprisingly uninformed about it so perhaps other members can comment on this.

Michael,

Yes, scarring is certainly not unheard of in advanced KC - it is one of the main reasons that suggest a graft is needed.

But Tim's visible, white scars are unheard of (at least, by me!)

My scarring was severe enough to require a graft, but I was pretty much unaware of it - neither my friends nor myself could see the scarring.

Yes John

The only time I can remember having visible white marks on my cornea was when I developed a deep ulcer (due to a lens that had become ill fitting).

That was why I ws asking Tim about ulcers.

Andrew

I would happily settle for white scars on the sclera, but this morning being able to see a bit beter, half my right eye is red and I do not mean blood shot

No pain, lens is comfortable and vision is good so hospital have said give it a few more days to see if it gets better, but to see them ASAP if it does get painful.

Thanks John. Understood.

Gareth

You have not had to seek out trouble! I'd be alarmed if I found my eye had become red .. and I guess you have the same words going through your head as would be going through mine.

Your hospital sounds really laid back about all this. Do you think this is a confidence builder?

Andrew