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Reflections on the First National Keratoconus Conference 'Developing the Vision'

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I seemed to have resolved most of my own personal difficulties with wearing contact lenses and have written a follow up to an article I wrote for the Group a few years ago (to be published in the next newsletter). I may not have completely conquered all the problems of sun, sea, sand, wind, heat and dust, but at least I had learned to live with them. I always intended to come to a Keratoconus Group meeting, but each time I put it off. I was OK and had other things to do. Why should I want to meet other people with the same problem and with whom I probably had nothing else in common? What did I have to learn? I never quite got around to attending a meeting.

Then came the first national Keratoconus Group conference. It was a cold and wet winter’s day and I had nothing to lose. What an eye-opener!

Some of what I learned appeared trivial. I never knew that the first corneal transplant was performed in 1873 on a gazelle. I never knew that rhesus monkeys were the only other species to develop keratoconus (KC). But there were far more important messages in “Developing the Vision”. Prof. Roger Buckley helped me understand why he believed it important to keep people in contact lenses of all types for as long as possible and why the enthusiasm of the surgeon was not always for the best. He explained that KC corneas aren’t actually cone-shaped at all. He also helped me to appreciate the need for a national, EU or even international policy for the management of keratoconus.

Ken Pullum and Sue Ingram both made me recognise that I had little to complain about with my hard lenses. Sue, with her hybrid piggyback combination of three different lens types (hard, soft and sclerals), amazed me with her perseverance. Whenever I groan at having to clean my lenses last thing at night, I will remember that Sue has far more cleaning with her multiple solutions and lenses. Valerie Smith assured me that KC was not sex-linked, which surprised me, because I have one brother with it and four sisters without it. More importantly, Valerie inspired me with her research into the biochemical cause of keratoconus. I had certainly never heard of the enzyme metalloproteinase MMP-2 before, but I now understand that her ‘cornea in a test-tube experiments’ are starting to pin-point the source of the condition. The possibility that eye-drops incorporating MMP-2 inhibitors could be developed before long is a remarkable step forward. Maybe at some future KC conference someone will be able to explain KC genetics and its ultimate cure.

Over an excellent King’s Fund lunch we naturally mused over whether diet could improve keratoconus. Probably not, but it was fun to imagine Popeye downing spinach to assist his eyesight or to compose “a jelly a day keeps KC at bay”. In the afternoon Anne Klepacz impressed me with her courage and determination over many years. Without her 'vision', an understanding of keratoconus would probably still be reserved for the specialist and many more people would have had to endure the confusion, which she faced. I am also grateful to Mike Oliver for maintaining Anne’s 'vision'.

Lindsey Bennister helped to emphasise the difference between a disease, something which can be cured, and a condition, something which you learn to live with. The Long-Term Medical Conditions Alliance (LMCA) was new to me, but must be of interest to everyone from diabetics to cardiac sufferers. Perhaps it could lobby for lens solutions on prescription? Gill Levy (RNIB) raised a few eyebrows with her stories of the treatment of those with learning difficulties, like the ophthalmologist who suggested that those with Down’s syndrome were not proper people. Any disparity of treatment must be questioned, despite the difficulties, which have to be faced. I still make a mess of getting contact lenses into my own eyes in the morning and have to enlist volunteers to scour the carpet floor last thing at night!

I had plenty in common with Mark Bennister, who made me wonder if we should together set up NCFPIPW, the National Campaign For Plugs In Public Washbasins. Like him, one of the magic moments of getting contact lenses was being able to see the detail in trees for the first time. Phil Davis just keeps on running and I look forward to sponsoring him in the 2002 marathon. There’s no getting out of it now, Phil!

So many speakers from the floor said things with which I could identify. “That happened to me too” and “I felt like that”, I kept thinking. The conference was a wonderful opportunity to share common experiences and learn a little more. Vision is not just about sight. Vision is not just for ophthalmologists or optometrists, doctors or patients, geneticists or biochemists, surgeons or clinicians, university researchers or university lecturers, social workers or charity workers, hotel chefs or machine workers, occupational therapists or psychotherapists, Down’s people or those just feeling down. It’s about all of them listening to each other. Vision is about solving problems and finding solutions (Boots, Boston or Bausch?). Vision is about making contacts (Madden and Layman?) and sharing ideas. Vision is about seeing into the future. There’s far more to vision than meets the eye! Thank you to all who organised and contributed to the 1st National Keratoconus Conference. I may not have had my sight restored, but you helped me “develop my vision”.

I left the King’s Fund and headed off into a wet, cold and blustery Cavendish Square. I found my way past the Oxford Circus crowds and down into the underground. Suddenly some dust flew into my eyes and dislodged my contact lenses from their corneal perches.

All around me became blurred. I fumbled around in my pocket. Where had I put that darned mirror? I was back to the reality of living with contact lenses. I had lost my sight, but not my vision of a better world.

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Page last updated: 19 February, 2015