Gathering more info...

[madmish]

when i first went to the optician around 4 years ago they susspected i had KC, i went to specsavers by the way. they gave me some glasses and told me to come back if i had any problems. at this time i was up the duff with my 2nd daughter so i had other things on my mind. i struggled to see , had blurred vision i literally had to close my eyes to read, but i just got used to it and never went back. they never referred me to my gp or the hospital. then about 2 months ago i started to get an unbearable pain in my right eye. i went to my gp and she reffered me to the royal albert edward infirmiry in wigan, lancashire. my consulant immediatley recognised my KC and called in all the students!! he said my optician should have reffered me when they first susspected my KC, and he couldn't believe how i'd managed for 4 years!!i went back on tuesday and got my first set of lenses. i cannot believe the difference in my sight since wearing them, although i can only manage around 1 hour a day. i am not sure of the type of lenses i have.i know they are rgp's, and on the little pot i put them in it says.."bauch and lome". sorry to go on and on, but it feels good to talk to people who actually know what i'm on about, and if my info. helps others in anyway then thats a bonus!!

[Sophie Bull]

Hi Lynn,

I am 22 have been diagnosed with keratoconus since the age of about 16. I had a graft in my right eye at the start of december and now wearing glasses to help that eye and have resorted to softperms for my left eye and now talking about the option of intacts.

I was intially under the care of Bath RUH hosptial, but they were basically hopeless, so switched to a very helpful private optomerist in Bath who was willing to try out different types of lens.

Since moving to university in Sheffield I am now under the care of the eye department in the hosptial here. The difference is incredible, they are so much more helpful and give me much more support than Bath ever did. I do not pay for my lenses as they are under the NHS, which is great as I have had so many different types and fittings in the last two years. I had my graft done here at sheffield and they have been really helpful.

Hope this helps
Soph

[GarethB]

1986 Diagnosed with KC straight from no corrected vision to RGP lenses in both eyes supplied by familly run high street optician as he had experience of KC. Main highstreet ones never heard of KC and not interested. KC confirmed by specialist who knew the optician.

1988 Got graft to right eye as completely imposible to get a lens to stay on. At this point Rose K lenses not available and I think some research might have started on Scelrals (not know about at the time), donour material fresh tissue

1989 Graft in left eye using stored frozen tissue as lenses kept falling out like before.

1990 Stitches removed, sight gradually improved, wore glasses from any highstreet optician.

1991 - 1994 no eye correction needed; One of the few lucky ones.

1995 back to glasses but apparently nothing to do with KC

April 2004 local optician (another familly run one that I had seen since 1995) thought my right eye was not as it should be, referred to hospital. Thought it was KC but never heard of a graft/eye going KC again.

August 2004 after GP told me I was safe to go on holiday 600 mile driving tour of Europe including racing my car at the most dagerous curcuit in Europe sent home from work with headaches. Specialist appointment brought forward and old cornea gone KC so pulling the graft out of shape! Now on Rose K RGP lenses. Due to specialist fitting/selection my optician and I thought best to go through the hospitals optometry department. Main highstreet chain of opticians at the mention of KC nod symapthetically and completely ignore it!

If the technology in contact lenses had not been as it has been during the past 19 years I would be looking at a re-graft and due to the size of disc required with s slim chance of succes apperently in my case or the other possibility is removing part of the duff cornea and pinching the rest together, again slim chance of succes. Will stick to putting things in my eye.

That is myKC history in a nutshell if it is of any use.

Gareth

[shoayb]

~HI, I have my brief history on the first thread i started when i found this site...
But hey ho... here goes..
ONLY just(compared to others here!) been diagnosed with KC....
Have just managed to find my way throught the NHS Red Tape, saw the consultant at the hospital and then referred to a private Optomotrist Since the hospital won't do the fitting?!?!?!?!? It;s a bloody big hospital and won;t do fitting?!?!?!
anyways... just got me firdt pair of lenses last week..
RGP's some kind of Hybrid material... Welll see what happened is after the first day i managed to loose me right one!!!!!!!
So waiting on that to turn up again and try starting this contact wearing bizness!!!!
They said NHS will only pay for the ONE pair of contacts.. all the others i have to pay!
How did you do it on NHS Sophie!?!??!
Keep up all the good work Peeps!!!!

[Lynn White]

Hi guys...

This is all excellent stuff... shoayb - which hospital was that then??

I am afraid the NHS has this attitude that if you lose or break contacts or specs - you have to pay for the replacement.

For those people who have help because of low income this is a bit weird because if you could not afford it in the first place how come you can in the second? Well... this is historical because when teh NHS first gave out free glasses in the 1950's, people pretended they had lost or broken them just to get a second pair., Within the year , the govn't introduced charges! The first private charges in the NHS ever! Guess the attitude struck.

All these histories are very interesting... by the way Gareth...sclerals are actually "old" technology in that they were really the first type of contact lenses. Their continued use in KC is due to the fact that they vault over the cone thus not putting pressure on it. The challenge for corneal contacts is to put as little pressure on the cone as possible... Also, of course, sclerals don't fall out!

Would I be right in saying that the main reason for grafts here is that contacts would not stay in?? Who had grafts only when they had extensive corneal scarring?

Lynn

[GarethB]

I think you ar absoluly correct, most grafts are when the lenses will not stay in.

It will be interesting to see how many are due to corneal scaring or the fact that although the lens stay in, now real usable sight can be achieved.

Considering Sclerals are relativly old technology, it is interesting that they appear to have taken a relativly long time to find a use over the 'normal' syle of RGP lens.

[Jacqueline Cheetham]

Hello Lynn, For many years I went to Moorfields, as I honestly thought this was the only place to go. Many a time after an appointment I have thought to myself 'what was the point' especially as I travel 2 and a half hours to get there. To cut a long and boring story short, about a year ago I had cause to see a private consultant in Cambridge, who recommended that I saw an ophthalmologist in Hitchin. I did and now wear soft lenses and am more comfortable and see better than I have for years. Hope this helps. Moorfields didn't work for me anymore, after many years of doing so. Things just change I guess. Systane is brill.... so is Clens 100 for those 'uncomfortable' times. Jacqueline.

[Lynn White]

Thank you Gareth and Jacqueline...

Gareth...

I think sclerals found their usage after it started to become clear that RGP's were in fact causing scarring. The original thought was that fitting a flat RGP to bear down on the corneal surface would "push back the cone" thus "halting" KC.

This has its basis in "orthokeratology" which is enjoying a renaiassance at the moment. This is where you fit flatter and flatter lenses to reshape the cornea so that the patient then only has to wear the lenses a few hours a week and the rest of the time sees well without them.

With KC, after several years of wearing flatter lenses, patients were presenting with corneal scarring so thoughts turned to "vaulting" the cone... ie fitting a lens which did not actually touch down on the sensitve cone.

Sclerals fit this requirement because the lens is supported by the white of the eye (sclera - hence its name!) and the front part stands proud of the cornea.

Having said that, I have never really used sclerals for KC - you can get RGP's that are larger than the Rose K that only "feather touch" the cone and since I have started using soft lenses, the kerasoft in particular, I have never come across a patient that needed to go into sclerals. That does mean to say I won't! But suffice to say I haven't yet .... I only fit them for cosmetic reasons (damaged eyes etc)

Jacqueline...

What you say goes some way to confirm what I thought.. that if you can get soft lenses to work then people really do not have so many problems. They are comfortable and don't fall out... and if it seems grafts are mainly because RGP's won't stay in..then it gives food for thought.

But I will see if we get more responses to fill out the picture!

Lynn

[Jacqueline Cheetham]

Lynn. I work in the Dispensary of our local surgery. I have had fantastic support from the Doctors who all tend to say to me.' You know what you want we'll support you.' That gave me confidence to carry on looking for alternatives to the sclerals that no longer worked for me. As I said before things change and alternatives are sometimes not offered. You have to do this for yourself. Jacqueline.

[Lynn White]

Yes Jacqueline... you do.. because no-one else will do it for you...

It's a fact of life - unfortunately..

I am glad you have a supportive team behind you....

In a way - that is why I am on here.... to try and help people not to just accept things the way they are.... sometimes you just have to realise there are other options out there.

Now I am not knocking the NHS here... I have worked within it all my working life... BUT I have seen how things work in other countries and I now realise that the NHS makes you complacent. We believe that the NHS does the best for us and its not right to question it.

But the NHS is beset by beaurocracy and often budgets and targets come before patients.

I say to everyone... explore your options!!

Lynn