UK Keratoconus Self Help and Support Association
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I have had Keratoconus for at least 25 years. First of all, I would like to say that I think the idea of this Conference is wonderful, particularly to help raise the awareness of Keratoconus. I would also like to thank Anne, Mike and everyone else who has been involved in organising it.
I had been suffering with Keratoconus for about 15 years before the inception of the KC Group by Anne in 1991. Up until that time, I did not really know anything about Keratoconus, other than the fact that my cornea was cone-shaped, corneal RGP contact lenses corrected my vision, but unfortunately glasses didn't. In all that time, I had definitely not met anyone else with the condition. So, I did feel a bit of a rarity! Attending my first KC Group meeting was quite an 'eye' opener! It was the first time I had met anyone else with KC and it was wonderful to exchange experiences with other sufferers and find out more about the condition. However, I think one of the most important aspects of the - 2 - Group is the fact that we can help and support each other and know that we are not alone out there;
I have found that the new Discussion Group on the KC Website has proved an excellent medium for this. Attending the KC Group meetings also made me realise that the condition appears to manifest itself slightly differently for everyone, that there were KC sufferers much worse off then myself and that there was more than one method of managing it; I found out about scleral lenses for the first time which scared me half to death - I could not believe that people actually put those things in their eyes! Those were the days of eye moulds and PMMA sclerals. Now, I do wear sclerals myself - luckily things have developed and they are gas permeable now.
Over the years, I have come to the conclusion that another description for managing KC has got to be Catch 22; it does not seem to be possible to get all the necessary criteria into one type of lens, that is, good vision, comfort, wearing time, less mucus, cosmetically pleasing etc. It seems that no sooner do you get one of these right, than another of the factors goes straight out the window! This can prove to be very frustrating, as I am sure most of you are aware. Up until about three years' ago, I managed relatively problem-free with corneal RGP lenses, wearing them from the moment I got up in the morning, to the moment I went to bed at night;
I refuse to let KC rule my life and stop me doing anything I want to do. However, by this time I was suffering very much with mucus in both eyes and a lot of pain in my left eye from wearing the lenses. Again, Catch 22 comes in to the equation - cannot wear the lenses, but cannot see without them - it's a vicious circle. It was getting to the point where I could just about keep the lenses in for work and that was it; life only existed between the hours of 9.00 'til 5.00 - I felt like I was in the twilight zone the rest of the time!
I cannot fault Moorfields; they were excellent in trying everything possible to get a left corneal lens that I could wear. A year and many corneal lenses later, it was suggested that I should try scleral lenses - my biggest dread! However, on the positive side, this was my first introduction to the amazing and dedicated Mr Ken Pullum. Eventually, the day arrived when I got my scleral lenses.
Even though I had worn contact lenses for nearly 23 years by that time, I found it extremely difficult to put the sclerals in; I think the fact that I felt like a freak when wearing them did not help! It would take me over half an hour sometimes in the mornings to get each lens in without any air bubbles, and that was amidst many tears of frustration and stamping of feet! Of course, I have got over all that now and don't think anything more of wearing them than my corneals. Eventually, I found the best solution was to wear the sclerals during the day and the corneals in the evening; it seemed that as long as I did not wear the corneals all day, my eyes could tolerate them. What is strange, though, is I cannot wear them the other way round, otherwise I get the pain in my left eye again. I was very pleased with the comfort of the scleral lenses, together with the big bonus that if my corneals were hurting, I did not have to just take them out, stop my life and become a cabbage, I could swap them for the sclerals and carry on - it was the first time in my life that I had this choice. But, here comes the catch.
The vision was just not good enough with the sclerals, especially for reading and computer work. So, it was back to good ol' Ken. It was at this point that I wondered whether the time had now come for me to have a corneal graft so I discussed this with one of the surgeons at Moorfields. I have always felt, after having read about rejections etc, that a graft is a bit drastic, and should only be considered as a last resort when there really is no other way of managing the vision, or the person just cannot carry on their life, and that one should persevere with lenses as much as possible before taking the plunge.
I was very much relieved to hear the surgeon saying practically the same thing. So, I decided to stick with Ken.
Ken has many ideas to try and help KC sufferers by modifying scleral lenses; we have been working together over the past couple of years, initially to try and get my vision better with sclerals, but ultimately to research and try out his ideas which will hopefully mean more options for KC sufferers. A lens that works for one person might not work for another, so each person needs to find the right option for them. As Ken stated, he has received a little money already from the KC Group for his research, which has been most welcome, but has had to carry this out in his own time, so it has all been painfully slow; as we know, time and money are very precious commodities these days. Ken believed that if he made a scleral lens closer to the eye, with a contact zone on the cornea, the vision might be better. So this was the next step for me. When wearing the contact sclerals, my vision was very much improved, nearly as good as with corneals. Wait for it..., where's the catch, I hear you ask? Well, it was only possible to wear these lenses for a short period of time - my eyes did not like the contact zone of the sclerals.
I was getting a couple of hours' wearing time at the most. By this time, I was having trouble with mucus and my own sclerals, and struggling with the vision at work, plus the fact that I was also studying now. Back to Ken to have a moan!
For the interim period, Ken came up with a pair of specs that I can wear with my ordinary sclerals; this helps me when reading and using the computer. Don't ask me what he did, but it took about 3-4 hours of concentrated twiddling to achieve! Then, it was moving on to coated contact sclerals in the hope that with the coating I could wear the contact sclerals for longer.
This did work to a certain extent; it made the wearing time a lot longer, more or less all day in one eye, and about five hours in the other eye. However, it was when I took the lenses out that I had the pain and was then unable to wear my corneals for the rest of the day, which is unworkable for me; it seemed that when the pressure from the lens was on the cornea, no pain, but when it was released, pain. The excellent bit about the coated sclerals is that I get no mucus - by now I was getting buckets of the stuff with the normal sclerals and quite a lot with my corneals, but with the coated sclerals, it is negligible.
Obviously, copius amounts of mucus affects the comfort factor of wearing the lenses. The most recent event in over two years of trial and error, was to wear disposable soft lenses underneath the coated contact sclerals (called piggy-backing). This seems to help fantastically with the wearing time. In actual fact, the best vision I get is with soft lenses in both eyes, one coated contact scleral over the top in my right eye and one corneal lens over the top in my left eye. Due to the fact that the contact scleral is coated and also not so bulbous, it is difficult to tell that I am wearing two different lenses - if anyone wishes to come and inspect me later, they are very welcome!
The comfort factor whilst wearing the lenses like this is excellent, the mucus is negligible and I can see better - amazing! It is a bit of a faff wearing and looking after three different sorts of lenses but what the heck, if it helps my vision, I will try anything. Of course, whenever I go away now, I need one bag just for all my lenses and solutions! However, there is still one small catch; again, my eyes do hurt a bit when I take the piggy-back lenses out and this stops me wearing them continuously over a period of time. So, I now tend to mix and match -
I organise my days so that when I need the best vision, like today, I wear the piggy-back lenses and then swap to my sclerals with specs, and corneals in the evening, for the next couple of days. Funnily enough, this also seems to have reduced the mucus problem with my ordinary sclerals - maybe because I am not wearing them every day, who knows? So, all-in-all, it is pretty successful. If I am not wearing two pairs of lenses in one eye or wearing three different types of lenses at the same time, I am wearing lenses and specs - it makes me wonder what other combinations they will come up with in the future!
The most important outcome of all this, as far as I am concerned, is that now I actually have a choice. The main problem with managing KC with lenses is that you cannot just put on a pair of glasses to give your eyes a rest, but being able to swap the lenses around like this seems to be the next best thing. One day, there might be a lens out there which will be able to incorporate all the things that we require and dispense of the Catch 22 syndrome forever!
If it was not for people like Ken and his patience and dedication in helping us, then I don't know where we would be. Ken, I would like to thank you for all your time and effort in trying to improve my vision; it is much appreciated. To all fellow KC sufferers, all I can say is, find the best solution for you, stay optimistic even if it is a long time coming, and don't let KC rule your life or deter you from doing anything.
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Page last updated: 19 February, 2015