UK Keratoconus Self-Help and Support Association

Hi everyone, I was diagnosed with KC in Jan 2004 by Specsavers opticians who explained, as best they could, what it was and then told me that I would be referred to the hospital.

The reason for getting my eyes tested was that I noticed a slight deterioration in my vision and had a driving test coming up. My vision was still good enough to drive so I still took the test.

After going to the hospital they gave me some specially fitting RGP contacts. Not only did this make my vision worse but I felt like I had stones in my eyes and they would dry up after 30 mins even with comfort drops.

At that point in time, I was moving to Lincoln with my girlfriend and because of changing hospitals never thought much of it. I would test my eyes a lot by covering one of my eyes with my hand; by doing this I noticed that my right eye had slight ghosting and less vision clarity, my left eye was not too bad but I had been told it also had KC. When using both eyes, I would barely notice the ghosting in my right eye so the better vision in my left eye must have compensated for it by being the stronger of the two. This still annoyed me because I am a bit of a perfectionist.

Anyway, up until a few months ago I have dealt with it ok but just recently it has been making me feel depressed, angry and upset. The reason for this is that my right eye has deteriorated more and my left has also got worse. I believe that I still have mild KC, as my vision is still fairly good and I am able to drive, however, something that I used to be able to ignore has now become more difficult.

As I said before, I'm a bit of a perfectionist; well quite a lot actually, always have been which doesn't help matters. Anyway, the recent changes in my vision have been drier eyes, more ghosting, streaking when I blink, glare from light (one of the most apparent especially when driving at night), multiple images when, say, looking at the moon or street lamps and, most recently, what I can only describe as floaters that don’t move and are always there; maybe corneal scarring, who knows. Because of these recent changes in my vision it was back to the hospital which sent me to the contact lens clinic (Lincoln). I explained that I had tried RGP and didn't get on with them so he said he would try these new RGP with soft outer skirt. I was excited only to be let down once again. The vision was sharper yet so was the ghosting which bugged me even more, not only that but even though they were slightly more comfortable than my RGP I was still very intolerant to them. I told the optician guy this and he was very unhelpful and patronizing so that was the end of that one.

In my personal experience, the contacts that I have tried, I feel, weren't doing my condition any good. So here I am today not wearing contacts, putting up with this annoying condition and not knowing when it will progress to another level. I have researched for hours on the web and know all the options.

I think I would feel happier if I just had an optician that was kind and not willing to just give up as soon as something wasn't right, as KC is a difficult condition to fit contacts for (as most of you probably know).

My most recent thoughts have been to go to Moorfields eye hospital in London, in the hope that they are a lot better at treating KC patients? Also, I have been looking into intacts which I'm not sure I am ready for.

I have an appointment back at Lincoln hospital on the 18th May to measure the thickness of my corneas, basically to keep track of any change.

Anyway, I'm sorry for the long post but thought it would be a good way of introducing myself to everyone. Also, sorry if I sound so negative but that has been my experience so far. I do have positive things in my life, as I'm sure all of us do, but when it comes to KC and treating it, as yet, it has been negative. Thanks for taking the time to read this, any advice would be appreciated. Ed x

Ed

Welcome to the board; and thanks for that informative post!

I guess to get right down to the main question in the post, Will you be better off at Moorefields? Hard to say, but both Moorefields and a Optician who has experience fitting KC patients should be able to assist in finding you a suitable pair of lenses. But as you know, thats a more difficult task then seems.

There is a post on the forum which lists all Opticians across the UK (or rather lists those that have been used or alerted about) that have experience in fitting KC patients....may be worthwhile taking a look at that post.

Aside from that, it may be worthwhile seeing what your next appt brings and then maybe get a referal to Moorefields in the interim?

Jay

Hi Edward
Depressed, angry upset? Yep! I think I can safely say that most of us have been there at some point (some of us are still there!) - but what is so good about this forum is that you are not alone! Everyone has been really helpful and supportive to me since I joined in last December, and I am sure that many others will respond to you in the next few days too, and give you the support you need. Most are far more knowledgeable than I am about this condition!

I'm currently struggling with RGP's so I know just how you feel - and I think it's really important that you get to see someone who is understanding and helpful - not patronizing and indifferent - and can suggest alternatives. I'm under Moorfields and they are very good once you get into the system (that's the tricky part!) - and we're working through different RGPs, and I guess the next step may be piggy-backing (soft lens under an RGP) which seem to be successful for many. But as Jay says , if you can find a local optom who can help, that will be so much quicker than waiting for Moorfields.

As far as dry eyes are concerned, worth trying Systane - many people here use it and find it helpful - it certainly gives me some benefit, although somedays it's better than others!

One word of caution though - you may need to be very careful driving at night if what you experience is the same as me - and your post suggests it may be - because you may be breaking the law and invalidating your insurance. And even worse, you may be unsafe! I know that is depressing but is something I think quite a few of us have had to come to terms with.

Keep us posted how you are getting on.

Ed.

Welcome to the forum.

I am sorry that your RGP's and the soft skirted RGP's were such a disaster. You should not give up on lenses; there are several sorts and several different materials.

Me experience of contact lens fitting was quite different to yours. In Glasgow and Aberdeen the hospital fitters kept ontrying with me, and even when my eyes were becoming lens intollderant, they kept on trying until every option had been exhausted.

All the best with Mooorfields. Stay in touch.

Andrew

Hi Ed,
Your story sounds so familiar. I was diagnosed way back in 1982 when I was 19 years old. Over a period of approx 15-18 years I persevered with local opticians and the local hospital, over all that period of time they never really found a sucessful left eye lens and then a few years ago the right eye started to get abrasions. Like yourself I got very low and depressed. My GP suggested referring me to Moorfields. I can clearly remember thinking "what could they do". Well there contact lens dept were excellent. On my first visit they fitted me with Rose K lenses which fitted comfortably. I cannot thank Moorfields enough. Even thougn hospital appts mean approx a 10 hour day to get there and back its worth every hour to get to such wonderful competent people. I dont know if this is the norm but I would strongly suggest you give them a go. It turned my life round.

Thanks for quick response everyone, all your points are very interesting. I have been looking at this site for months and never posted anything. I am glad I finally decided to, as talking to people with the same condition helps alot. Ed

Hi Ed,

Going to Moorfields you will have to wait a long time.

I would rate my local hospita as good as if not better then Moorfields.

What I can not make out is how many lens fittings you have had. It is common to have several fittings, this is because the lenses themselves put pressure on the cornea to some extent, so a refit soon after trying them is quite common plus it is not natural to lumps of plastic in your eyes so for an optom to get a good fit first time is very hard. There are also many types of lenses.

If I were you I would visit the gp and get a referal to the local eye unit. Now on the NHS you can choose from 4 in your area, so you have a dgeree of choice. This is where recomendation from fellow KC patients here can help and perhaps the new opoms list we have too.