UK Keratoconus Self-Help and Support Association

I am putting together an article about detecting KC in its early stages. It is going to be aimed at optometrists unfamiliar with the condition and deal with, amongst other things, how best to explain KC to someone you suspect has the condition and how to deal with the early stages clinically. Much has been written about later stage KC, but not much concerning early or sub clincal KC.

I would like to hear from you about how you found you had KC - were you happy with the way it was explained to you - do you think it could have been done better.

A lot of the problems with diagnosis stem from the NHS system itself (delays in being seen for first appointment etc) and the fact that if a practitioner suspects KC, they will often not say anything until real problems arise, as frankly not much can be done clincially at this stage. Also there is the thought that there is no point worrying a patient unecessarily if the suspected KC turns out to be stable and non progressive.

I myself recently refitted a patient who patently had had KC in one eye for 30 years but had never been told. It had not progressed and she has a serious medical condition with which she is more concerned than the vagaries of her eyeseight. I did not tell her either as with contact lenses she is not at all in any visual distess.

So we have clinical judgement balancing patients rights to information and I would be interested in starting a debate here exploring diagnosis from the patient perspective.

I would be happy to receive pm's as well discussion here and also if there are any optoms who read this board, I would be interested in your opinion too - especially if you feel not very confident in detecting KC and what to do about it if you do. My email address is white.lynn@gmail.com

I will not use any quotes from information given to me without checking for permission first (unless you give me carte blanche before hand!)

Thank you in anticipation!

Lynn White MSc FCOptom

Lynn

that sounds like an interesting paper.

Here's my contribution:

In my late teens I had an angry confrontation with an optometrist who told me that I had damaged my sight and that there was nothing he could do. He gave me some glasses and told me that I was lucky to be getting them. (He believed that my sight was poor because I was a smoker)

I struggled through University with glasses, my eyes became tired and very sore.

Age 29 I emerged from University. Age 30 I went to Aberdeen and ventured a visit to a new optometrist. He asked how I had been getting along and I said that I was pretty sure that there was nothing he could do because I had been told that having been a smoker (I had stopped in my early 20's) I'd never have sight that was better than below average.

He chuckled and looked at my eyes. I guess he must have recognized KC because he told me that I should go to my GP (a man with whom he happened to play golf) and drop his =name into the conversation.

I did this and the GP referred me to the Ophthalmology department at Aberdeen Royal Hospital Annexe at Woolmanhill.

It was there that I was told that I had Keratoconus, that I would go blind but that when that happened they would take away my corneas and give me new ones from a dead person.

I did have the presence of mind to ask about a link with smoking and the ophthalmologist told me that there were other good reasons for not smoking but that I could dismiss any thought that my having been a smoker might have contributed to my condition.

Aberdeen Hospital did not, in those days, have its own contact lens clinic, so the ophthalmologist referred me to a private sector optometrist they used, and he spoke to me about KC and lenses that might be worn. He did say that it was a pity I had lived so long with KC without lenses, but we both agreed that the past was not anything we could now change.

Interestingly having measured my corneas he got his sample set and found lenses that he thought would fit. He did not try to put them into my eye, but got his assistant to sit with me while I put them in myself. This was wonderfully empowering.

Sample lenses in place I went back so that he could look at the fit. I think he got me to change one eye but he thought that the fit in the other was okay, so he began the refraction. when I got my lenses I was amazed at how clearly I could see everything. I could even see faces and not just a smudge!

I went to see my GP and he went over what the Ophthalmologist had said to me. he had read up on KC between getting the letter from the hospital and my visit.

At that time I moved to Glasgow. I was pretty sure that I would be the one making decisions about any possible surgery, and having taken control of my treatment I saw a number of ophthalmologists over the years, delaying and deferring their entreaties to go for surgery. In this I was aided by Professor Kirkness who was working on his research interest in the very long term use of contact lenses as a means of managing KC. I was glad to be part of his project, and received simply excellent service from the optometrists at the Glasgow Eye Infirmary and continuing when that whole department transferred to Gartnavel.

I don’t know how much use this is to you, but you are welcome to ask any questions. By the way, reading the above you may begin to understand why I am not always just as respectful as you might like of "professionals" in the eyesight business.

Andrew

Lynn

I am now 42 was diagnosed at about 27.

Just had 1st graft 6 months ago, managed with RGPs previously. Don't know my topography details etc, haven't had it done for years, the poor quality of my vision seemed to be mainly due to scarring.

Found out that I had KC on a routine vist for lens check up on the high street. I really seemed to cause panic, my hubby was in the waiting room and was quite worried at the bustling and fussing going on! This was a tad distressing, but I had felt my vision was 'not right' for a while so I was pleased to find out why.In hindsight I wonder if the lenses were partly responsible for the scarring.

I had gone through a period of INTENSELY itchy eyes which when rubbed produced a big blob of white goo. I visted my GP regarding this and was told it was nothing to worry about. When rubbing causing KC is discussed I always feel it was the KC that made me rub.I think that was when my eyes changed and was shortly after the birth of my second child.

I was referred to the RVI in Newcastle and I am now cared for at the West Midlands Eye Centre in Birmingham. I cannot fault the care I have had at both these hospitals. I have been seen at short notice on several occasions, spent countless hours in the chair to achieve 'best' fit lenses and had a hopefully sucessful graft, with a very short waiting time.

If you have any specific questions feel free to ask.

Hi Lynn,

Out comes my old diary!

During A level studies in Septemebr 1986 I found some writting on white boards (not common at the time) hard to see and complained about the lighting. Teachers told me not to be daft as the person next to me could see fine. Had eye tests in 'normal' lighting and all was OK, just certain light conditions and colours. Got tested for colourblindness and nothing. It was not until after a particularly rough rugby match in early October 1986 where during a scrum I had kicked someone in the knee cap and it broke and their knee cap was half way down their shin. All hell broke loose, the ball flew out the scrum, the scrum collapsed and I got trampled on leaving me 6 broken fingers and a pair of black eyes! Eyes would have been far worse if I had not had my hands in the way.

Three days later I could see more than just light and dark with the odd shadow as the swelling subsided. Had an eye check at the doctors all was fine as far as he was concerned, but vision was permanently blured. Went to the optician and could read the top few lines although they were blured. The optician said he was bemused as what I was describing to him was as if I had glaucoma and possibly cataracts too although he could see no signs of cataracts adn an eye preasure test was within normal limits.

I got referd to the eye specialist whose practice was in the next stree to college and he also lived in the next village. The wait was quite short because the company my Dad worked for gave all employees private healthcare regardless of if you were management or a factory worker on the shop floor, it coverd you, your partner and children. The first consultation ni late October 1986was when the diagnoses was made, he said you have Keratoconus and everything will be OK where upon he proceeded to draw a big diagram of a normal eye and a keratoconic eye. The later he went through how you get distortion, how glasses could correct in early stages and why they would not help me and the process of glasses. At the very end grafts were mentioned and he did say very few patients end up needing a graft, even fewer one for each eye and the sucess rate is very high. We shall discuss this if a graft is necessary. He told me he felt it a waste of time to explain something that had a high chance of not happening.

Reffered back to the optician who had heard of KC and not seen many cases which is why the diagnoses was missed. Proceeded with fitting lenses and the rest is as they say history.

That is my sequence of events that lead to a KC diagnoses complete with explanation, I still have some of the drawrings he did too.

Hope this is of help and my next appontment in October is 1 day after the 20th anniversary of my diagnoses!

Gareth

Oh boy, this is dredging up the memories. I'm 43 now and was diagnosed when I was 17 or 18. My optician suspected KC and sent me off to my GP to refer me to the hospital. He had never heard of it and only referred me after ringing the hospital up to see if it was worth sending me to see them (his words). He was useless to me. On the other hand my optician was wonderful and I remember her taking a lot of time with me. She was very supportive and I had a lot of confidence in her. When my KC progressed far enough to need rpg's I was no longer in her care and felt very cast adrift. She's still my Dad's optician and asks after me each time he sees her. She is an absolute gem.

I'm someone who likes to know exactly what's going on so I found the lack of 'solid' information incredibly frustrating. There seemed to be plenty 'out there' about other eye conditions but not KC (remember this was circa 1980).

The lack of continuity in the doctors etc I saw at the hospital made my visits there feel very impersonal and made them more stressful. The day to day struggles my poor sight caused me were never acknowledged which left me feeling very isolated and depressed.

The worst moment of my KC was when my optician diagnosed it in my other eye. That was when I was around 19 or 20. Prior to that I was pretty much okay with the whole thing because I still had one good eye, but to hear that one had it as well really knocked me back. Obviously she hadn't warned me that it usually afflicts both eyes.

I can't remember when I first heard about grafts. My KC steadily progressed without pause throughout my twenties but I don't think a graft was mentioned by the hospital until they offered me one, which as I sit here thinking about it now came as a huge relief so I must have found out about them myself. I think had I not known about them I would have been very depressed about my KC. I always struggled with my lenses and not to have some hope of a lens free life would have made things even more difficult for me. My worst fear was that my KC would stop progressing and not reach the stage of being bad enough to be offered a graft.

I hope this helps a bit Lynn.

I am the parent of a teenager and we live in Canada. I can tell you how we heard about KC and how I (as a parent) felt about it. I took my son to the optometrist because he (my son) said that he was not seeing so well. We both expected to hear that he would need glasses (everyone else in the family wears them). However, the optometrist was unable to get a clear assessment and told us to come back on a different day and he would use drops to dilate the pupil. When we went back a few days later, the doctor took more readings and a computer topography (he seemed to know what he was looking for) we did not get the drops. He then told us that my son had keratoconus and that it was a progressive degenerative disease (I have to tell you this strikes fear into the heart of a parent), there was no cure but that contact lenses would help and a small percentage of people may need a corneal transplant later on in life (more fear). I had never heard of the disease and wanted to ask if it caused blindness but was afraid to ask because I did not want to hear the wrong answer (especially with my son there - please tell people straight away that it does not cause blindness because that's the first thing people question). He referred me to a corneal consultant (who we fortunately saw two days later). He confirmed the diagnosis and did tell us that blindness is extremely rare. He directed us to a website and I've been researching KC ever since.

My son seems to be getting along just fine. He sees well out of his "good eye" and does not want to wear glasses or contacts at the moment. I searched for the best web site of "positive information" about KC - which happened to be by a company that made intacs and I gave this to my son so that he knew what he had, and what treatments were available. It also stated very clearly that KC does not cause blindness. I felt this was necessary because he is sensitive enough to know when I'm upset and I didn't want him to think that I was not giving him the whole picture - mom in damage control.

Good luck with your research - tell people to
focus on the positive.

Fear is a waste of the imagination.

Thank you all...

Just popping in here to say yes, this is what I want and it is very helpful. It is clear that a supportive optom at the diagnosis stage does help - as opposed to someone just saying there is something wrong and sending the patient off to the hospital.

I was interested in what Kim said about not going blind. Would more of you feel better if this was told to you right away? I personally always am wary of saying that at the inital detection stage in case it makes patients worry more. (As in "I just came in for an eye test and now she is talking about BLINDNESS?") However, I guess people get the point there is something wrong when the test is taking longer and the optom is struggling to get a clear image for you.

Please keep the info coming - this is excellent .

I'm 29 and I was told about a year ago that I have KC.

I have worn glasses since I was about 12 and moved onto soft contact lensed when I went to uni at 18. I had been getting on fine with glasses and lenses until about 2 years ago when I started to wake up with my eyes almost completely dry and they were sore all the time. Around the same time I saw my optician because I thought that I needed a new prescription and I was getting slight double vision. He said that my astigmatism was hard to correct with soft daily lenses but that I should stick with them if I could live with the result.

About a year later, a friend of mine had just had lasik surgery and was singing it's praises, so I decided to go along for the consultation so that I could find out if I was suitable before I made a decision.

Firstly I went to my own optician for an eyetest and they confirmed that my prescription hadn't changed for 2 years. About 4 weeks later I went for my laser surgery consultation. She carried out numerous tests and said it wasn't possible to do the surgery then because my prescription had changed from the previous one, my short sightedness had slightly improved, but my astigmatism had dramatically worsened. I couldn't understand how in 4 weeks my vision had changed so drastically, so I returned to my optician and asked to be retested. They repeated the fact that my prescription hadn't changed, so I went to see a third optician, who came up with a completely different prescription. Now i was utterly confused, but went back again to my own optician, who finally said, I believe you have Keratoconus. He told me that this was essentially an irregular shaped cornea and that I could try RGP lenses if I wanted. This was the only information I was given. Since then I have bought a pair of RGP lenses which I am completely unable to wear. I have returned a couple of times because of this and his attitude has been, 'what do you want me to do about it'. I have received virtually no information or advise from him. All of the information that I have was found by googling various spellings of the word that I thought he said, which did make my family laugh as they though I said I had 'Kerry Catona's' which obviously they took as a euphemism for something else!.

At the moment, I think that if I do have KC then it is quite mild because I can get by with my glasses, but on a bad day it's quite difficult to see. I am in the process of trying to find an optician who has experience with KC sufferers so that I can get my diagnosis confirmed and hopefully start the process off again in the right way this time.

I think that you should be told straight away about KC and given as many facts as possible, with referrals to websites like this where you can discover that you aren't alone.

Incidentally, my case does support the whole Atopic thing as I have Asthema, hayfever, eczema and i'm allergic to dust, dust mites,animals especially dogs and certain fruits! My hayfever and allergies mostly manifest themselves in my eyes by the sclera completely swelling up and taking on a jelly like appearance which when I was younger I used to rub continuously.

Hope this is of some use to you. I feel better having just related my story to someone.
Thanks
Emma

PS Sorry about the huge essay

Lynn,

Blindness was never mentioned to me because it was explained glasses and contacts are fine for most and they lead perfectly normal lives.

Even the graft procedure that would most likely leave me waering glasses, possibly contacts.

Blindness was never mentioned and my Mum (a nurse) never asked the question. To the best of my knowledge the idea of going blind never enetred our heads.

Only Christmas 2005 did the idea eneter into converstion because fo the lens fitting issue and then it was the fact the clinclly blind people can still see somethings and for reading and some other things extra visual aids are necessary.

Hope this helps.

Gareth

Ok i will add mine here as well, hope it helps!

I always say that i was diagnosed at 14 although this isn't strictly true but it was when i knew i had a real eye problem. I wore glasses on and off since about 7 which were absolutely useless so i didn't really use them but had a lazy left eye which my parents thought it would help with. I kept on at my parents later though that i just couldn't see very well and was finding it hard to see the blackboard in school. After years of Specsavers trying to give my parents glasses for me and telling them that my left eye would never see they finally sent me to a different optom.

He was very unhelpful and i was more worried about the whole thing after that. By the time i saw him i was 14 and wouldn't let my parents come in with me when i got my eyes tested as i had been through enough eye tests by then and was adamant i could do it alone. All i remember was him saying he needed someone else to look at me and then two more optoms in the practice came to see me.

My parents weren't around as i just asked them to drop me off so i got left with an explanation something like we think you have a serious eye condition which you need to go to the hospital for as we can't treat you here, and that you will probably need eye surgery in your twenties before you can't see well. Of course i took this that i was going blind and was devastated, i knew glasses didn't help but thought they could find something. I asked if i was going blind and they said that without surgery on my left eye then yes that would happen. That started a whole worry about never having surgery and that fine i would do well with just one eye then, stubborn person that i am! I was very busy with music then and the thought of not being able to read it really scared me. Sadly today that has come true as i have had to give up playing musical instruments as i just can't read the tiny music sheets and notes keep moving lines.

Things did change slightly though as he did come along with some lenses that i found brilliant and while the left did nothing for my vision the right let me read the whole chart! So suddenly me going blind wasn't much of a problem as he gave me something to play with that made me see. My parents didn't really ask a lot and had no experience with lenses so i played about myself. I found them really easy to put in and overwore them constantly and didn't do any build up time at all. I am lucky that i didn't mess up my right eye as that was the only good eye i had, but two years of playing with my left caused too much scarring when i later saw a consultant that he couldn't find a lens that i found comfortable let alone see with. I was wearing the left one because they said to, and though i didn't see anything with it i did as i was told and didn't question anything. He said that i needed them to see so think i had this crazy idea that the more i wore them the better my sight would be!

I don't remember being seen much then for follow ups either, i was just told to wait for a hospital appointment which was sadly two years later. By then i had caused too much damage but nobody had checked on this. It was like this optom sent me away thinking i was no longer his problem and nothing more to do with him and i didn't know to go back and get check ups. I just got my parents to phone for new lenses when i broke one!

It took two years to get to the consultant and finally get a name for this 'serious eye condition i had' which caused loads of worry. He wasn't happy with how i got told and that no-one had even told my parents and didn't think that at 14 i should have been left alone with RGP lenses and not properly taught how to look after them. Since then this optom has left practicing. I remember asking him to spell KC out to me but at 16 was way too interested in other things and so didn't think much else about it. I guess that i thought that seeing a doctor in the hospital meant that things were ok and that with one lens i could see.

After that i forgot about KC as in looking it up and finding out about surgery and just concentrated on finding an optom i liked who could fit me with better lenses. This did annoy my parents who just wanted me to be seen at the same place the family were as i wasn't different. Indeed my twin sister had no problems but i was working by then amongst studying and so found my own optoms that i liked My consultant did give me some details about optoms who could fit me and since then i have concentrated more on lenses than the condition itself, until of course i came to London and had major problems and finally gave it to having a graft!

Ok that's it! I think that it was badly told to me and am hoping that optoms do ask to speak to the parents as well as that would have changed things. The whole comunication thing was useless from my parents to the optom. By the time i was 16 my consultant couldn't tell them as i was classed an adult so they only found out when my twin sister had trouble at uni and needed lenses. She was twenty by then and i had been through six years of it already. They were then telling me she has KC which is why she needs lenses and i was saying yes ok, what do you think i have then? Do you think it would have helped if you had paid more attention when i was sent to the hospital and needed lenses so young???

Some things just escape me and i'm hoping that parents pay more attention about this as it is hard to cope on your own. If i ever have kids i'm sure that i would put their health and supporting them at a much higher priority.

Lynn yes i would have coped better if i was told i wouldn't go blind and if the optom had demanded my parents see him to explain. While i was stubborn and thought i could do it all on my own, i had still only just turned 14 and needed some support. I also needed more help with lenses and not just sent to a hospital for them to look after me.

Sweet X x X