UK Keratoconus Self-Help and Support Association

Hi,

I was told yesterday by an optician that I have Keratoconus - he assumed I knew - I didn't. I had been told that I had some astigmatism but not keratoconus. I was there to have my left eye checked as I have 'something' in the centre of the visual field - difficult to explain, but with a mother who had early onset macalar degeneration I thought I better get it checked. All is healthy at the back of the eye according to this guy but I have keratoconus. I wear soft contact lenses (monthly disposable) and have done since I was 18 - I have my sight and my eyes checked every three months and cannot believe that no-one has picked this up before - am confused and concerned and of course wondering if he could be wrong. He said that its nothing to worry about but mumbled something about corneal grafts...

Any advice or feedback that anyone here would like to give would be gratefully received.

Thanks

Fiona

fiona wrote:I was told yesterday by an optician that I have Keratoconus - he assumed I knew - I didn't. I had been told that I had some astigmatism but not keratoconus. I was there to have my left eye checked as I have 'something' in the centre of the visual field - difficult to explain, but with a mother who had early onset macalar degeneration I thought I better get it checked. All is healthy at the back of the eye according to this guy but I have keratoconus. I wear soft contact lenses (monthly disposable) and have done since I was 18 - I have my sight and my eyes checked every three months and cannot believe that no-one has picked this up before - am confused and concerned and of course wondering if he could be wrong. He said that its nothing to worry about but mumbled something about corneal grafts...

Hello Fiona, and welcome to the forum, as well as to the world wide fraternity/sorority of the distinguished few.

You will probably need to go to a hospital Ophthalmology Clinic to have the diagnosis confirmed. If arrangements for this ahe not already been made I'd ask your family doc to make a referral.

Keratoconus is a condition of the front part of the eye (the cornea is the little window through which you look out onto the world). The cornea becomes thin, and sags forward into a little cone. The effect of this is that our vision become distorted.

The very early stages of keratoconus can be hard to spot and can probably only be diagnosed reliably with the use of laser topography of the eye.

Most people with keratoconus enjoy good correction of their vision with the use of rigid gas permeable lenses. If these are not suitable, then there is a whole range of other contact lens options available.

There are other surgical procedures that can be applied if lenses stop being of use.

In the end, after everything else has been tried there are the options of various sorts of corneal grafts. For the main part these options divide into two different sorts of graft.

1 DALK. They take away the very front part of your cornea and stitch on the very front part of a donated cornea.

2 PK. They take away the full thickness of your own cornea and stitch in the whole thickness of a donated cornea.

The overwhelming majority of keratoconus sufferers never need any sort of graft (this is sometimes also called a transplant).

The message here is DON'T PANIC

I had a PK graft in 2003 and am now able to drive my wife's car

All the very best. Stay in touch and let us know when and where you are going to a hospital clinic. There is sure to be somebody else here that goes to the same clinic!

Andrew

Hehe Andrew that was really funny! Maybe you need to get your own car now and leave your wifes alone!! LOL!!

Fiona, hello there and welcome! While KC is a very odd condition you have come to the best place. For while we all have a little shout at times as life can be hard enough without this we still all get on with it and find loads of things to cheer each other up!

I agree with Andrew here (well there is a first time for everything!! LOL!! J/K ) in saying that you need to see an opthalmologist to make sure of the diagnosis. They will be able to answer any questions you have and indeed tell you about lenses etc. As you are already wearing soft lenses i would say to stick with these for the minute as you obviously see with them. There are loads of lenses to try so there is no rush, and please don't panic about grafts as that is a final treatment not a first idea!

Stick around and read the posts here as you will be able to find out loads about KC and how we cope. The home page also has some general information on KC which you might like to read. Take care and hope to hear from you soon, sweet

Bore da, Claire

is there a link to your home page? I don't see a little www tab at the foot of your posting.

Andrew

Hi Fiona,

Firstly in the immortal word of Seargent Jones and from the Hitch Hikers Guide to Galaxie; DON'T PANIC.

Keratoconus (KC is a funny thing). Good news is you have managed fro a long time with soft lenses, so the fact that it is only now KC has been detected is quite possible. The instruments used for examining the eye are very sensitive so are detecting KC far earlier.

If soft lenses no longer help, then Kerasoft mad do so, otherwise Rigid Gas Permeable (RGP) corneal lenses usually surfice. The optometrist tries to match the lens fit of the back of the lens to the cornea and any other visual correction is on the front.

Need for surgery only affects 5 - 10% of KC patients and is only done as an absolute last resort when the many lens options have been exhausted.

Hope this helps put your mind at ease.

Welcome to the forum and keep the questions coming.

Regards

Gareth

Damn phone went otehrwise I would have been first

Andrew ... prynhawn da as it is afternoon now! LOL!! Hehe please excuse the spelling!!

Hehe i wasn't talking about my site i was referring to the home page here! LOL!!

sweet

LOL Cute!!

Hello and thanks to everyone that responded to my posting.

Having learned more and read with interest what you all had to say, I must say that I am feeling much better. To say I was in a bit of a panic would have been an understatement - I think it was something to do with the visualisation of my cornea responding to gravity and heading northward! Not a pretty thought - and yes perhaps I do have an overactive imagination

I will see my GP next week and request a referral - I will probably be seen at West Wales General Hopsital or Prince Philip in Carmarthen - so if anyone has any experience of either let me know......

Thanks again for the words of comfort - thank god I found this site

Take care and thanks,

Fiona