Just diagnosed

[debbieo]

Hi everyone,

Sorry to butt in on all you experienced KC sufferers but my head's in a spin. Yesterday I went to a laser clinic to see if I was suitable for treatment for what I thought was astigmatism and have been told out of the blue I have KC.

None of my opticians in 20 years since I started wearing glasses nor one specialist I saw briefly in Harley Street (when my eyesight deteriorated by one dioptre overnight) have ever told me this and I have to say I'm rather shocked. Now that I've read this site and a few other bits, I realise that I've always had KC and it explains quite a few things that have never been quite right with my sight.

At the moment I wear glasses, although I've known for quite some time that my right eye isn't really adequately served by them. But no-one has told me that properly fitted contacts could benefit me.

So I suppose my question is, where do I start? Do I go to my GP, or how else do I find a KC specialist who will look after me? One thing I know for sure, I'm not going near the high Street opticians again, ever.

Also, the introductory stuff on the site suggests that KC often stabilises in the thirties and forties. I'm 39 now. As I can still wear glasses and drive now, would this suggest that mine is a mild case? What is the experience of others of a similar age?

[GarethB]

Hi Debbio,

Welcome to the forum and in the imortal words of Douglas Adams and the Hitch Hikers Guide to The Galaxy "Don't Panic'.

We are getting more people being diagnosed like you who have gone for laser eye surgery. As you correctly say you have probably always had KC but what we call subclinical which is why everyone else has probably missed it. Plus the laser surgerys have to be so careful with todays litigation culture that they have some of the best vision testing equipment around which is why they have diagnosed you.

The next step is to go to your GP and explain what has happend, be prepared for the GP to never have heard of KC, not many have and the same goes for many opticeans. Download some of the leaflest we have on the homepage as this will help him. He will then refer you to your local eye hospital who will more than likely repeat the tests you have ahd at the laser clinic and decide if the glasses they can provide will surfice or if you need to go the contact lens route of which there are now specially designed soft lenses for the milder cases or the RGP type which can cater for mild to quite severe.

You are also correct KC can stabilise, mine is quite sever and the RGP lenses are OK and since August 2004 it has remained stable and I am 37. I've had KC for 20 years and lead a full active and what I consider normal but there are those here who would disagree

Any questions, thoughts or concerns just ask away. If you feel you are asking something daft, ask it anyway, there are probably a dozen or more thinking the same thing and too afraid to ask. I know when I first came on here I asked many questions I thought were stupid and the guys here helped turn my life around and I am forever in the debt.

Register your details with Anne Klepatz (details on the homepage) and you will get news letters, info from past confrences, things to help you at work and the 2005 confrence will be out soon on DVD or in paper format if you prefer.

Hope this helps.

Regards

Gareth

[debbieo]

Thanks, even that small reply has got me feeling a lot better. I'll be on the case with my GP tomorrow.

[GarethB]

Please let us know how you get on and if there is anything else we can do.

I am sure you are aware of what a post code lottery referals can be. Where i live it is a couple of months, others it is longer, but from your first post it would appear you sre still OK with glasses so hopefully the referal time will not be a problem for you.

Regards

Gareth

[Sweet]

(((Debbie)))

Hey there and welcome to the site! I have noticed that you live in Staines? England? My twin sister goes to a brass band there which is why i know the place very well!

It is a shock to suddenly find out that you have KC. I am 30 and was diagnosed at 14 so it really went over my head for a long time! I agree with what Gareth has said about the legal limits with laser surgery and why a lot more extensive tests are done which is why they has probably only now picked this up.

I agree that you need to go and visit your GP. They are able to refer you to your local eye hospital. I am not too sure about Staines but i'm guessing that you are kinda close to Windsor? My old consultant Barry Holland is from there!

I am hoping that you will find a lot of information and support with this site. Please do not panic when reading as a lot of us here have had surgery, but not everyone does. The main reason why we are all here is to be supportive and most people here are having sight problems, we sadly don't hear much from those who are coping well!!

Take care and am hoping that you get a referral soon. Lenses are worn by a lot of people with KC who find them to be uncomfortable at first but this gets better with practice and wearing time. Hopefully you will be able to try some soon and get better vision!

Sweet X x X

[Andrew MacLean]

debbieo

Welcome to the forum, and no need to apologize, we are always gald when people manage to find us.

I guess that the way we learn we have KC can influence our whole experience of the condition. More and more people are being diagnosed early or with very mild Keratoconus: this because of the proper care exercised by clinics offering laser treatment.

Most people with Keratoconus manage to live their lives with help from glasses or (more commonly) contact lenses. There is a wide range of lens materials and lens styles available, and a skilled fitter of lenses to KC eyes will ind the right combination for you.

In a very small minority of cases, people with KC need surgery, but as you can see from the strings here the number of surgical options is increasing all the time.

So, as the Hitchhikers Guide to the Galaxy advised: DON'T PANIC.

If you have not already done so, I'd pop along to the GP and ask for a referral to your local Ophthalmology Department.

All the best

Andrew

[Anne Klepacz]

Welcome Debbie!
Not much to add to all the wise words already posted, except to agree with others that if your KC has been more or less stable for 20yrs and was only picked up when you went for laser treatment, it's obviously quite mild and is unlikely to progress much more now. But contact lenses would improve your vision, so do get your GP to refer you to a hospital corneal clinic. And do e-mail me at anneklepacz@aol.com if you'd like a copy of our information booklet on keratoconus and to join our mailing list for regular information.
Anne

[Louise Berridge]

Hi Debbie,

I've just read your posting and can totally sympathise with you. I'm 33, was diagnosed a week ago and experienced the same shock. Luckily I'd had perfect eyesight, until this year when I noticed blurring. Like you, I went to a High Street optician and after 3 trips and one to a Consultant, none of them spotted KC. On the 4th trip I was told there was some thinning. There was no urgency as far as they were concerned though, but I decided there was, and called into a hospital to get them checked by a consultant again. He recommended contact lenses, but as I posted the other day I underwent C3 R treatment on Friday. In all previous cases it has ceased progression and seems to stabilise the condition. It's new this year in the UK, but has been developed since 1998. At the moment it is the only treatment for KC. The surgeon said Opticians rarely carry out the test for KC as they think there is little that can be done, other than contacts. I'm not an expert like many of these guys on the forum but have undertaken a fast learning curve this week. Personally, I will be cautious of contacts as these can make KC worse, by irritation.

I hope you get the right help. Perhaps call into an eye department to get things moving? They should sign you up to the contact lens clinic. I saw the consultant a week ago and have just received an appointment for the 14th December, just to give you a rough idea of timescales.

I hope it all goes OK.

Louise

[Sweet]

Louise,

Hey there!

Yes contacts can cause many problems but i think that you have to personally balance it with wanting to see. There was a big debate here about lenses causing more damage or even causing KC to begin with, but it was taken that this would would be extremely difficult to prove and assess.

It is good that you have taken on a new treatment and we will wait to see how you get on! Hopefully very well! As far as i understand this treatment can only really be preformed on mild cases so for a lot of us here we would fall out of this bracket of people!

Lenses are what a lot of us use to see and without them i would be completely lost and unable to work. Hoping that if you ever need them they will help you.

Take care and wishing you all the best! ... Sweet X x X

[GarethB]

To put things into a bit more perspective the debate did concern lenses that were around 20 years or more ago.

Modern lenses allow far better gas transmission and optoms are better informed to tell patients how to get the best vision with their lenses.

As will all things in life we need to be sensible so many will recomend wearing lenses for between 8 - 12 hours per day and some will recoend one day a week rest. The other issue is KC can change of its own accord with no outside intervention so it is extremely difficult to say if thee KC is progressing of its own accord or due to outside factors.

With my complicated KC in th cornea my graft is attached to, it went nearly 20 years without a lens before developing so from my personal experience I would say lenses have as much to do with cotributing to KC as the increase in taxes!

Now I have a lens the KC is stable and has been for over 2 years!