Around 100 members attended the one day conference held in London on 17th September to mark 25 years since the first support meeting and 20 years since the KC Group became a registered charity.
Mike Oliver and Anne Klepacz introduce the conference.
Susie describes her life as a teacher and the adjustments her college made for her when she was struggling with her vision before having a corneal transplant.
Her talk includes a moving account from her son’s perspective.
Ashleigh Waldron gave an inspiring talk from a student’s perspective.
Ashleigh was diagnosed with advanced KC at a crucial time in her education. Despite a corneal transplant while she was still at school, she achieved excellent ‘A’‑level results and is now in the final year of an engineering degree at Imperial College, London.
Ashleigh describes her various coping strategies, making full use of the latest technologies to ensure that she is not disadvantaged in fulfilling her ambitions.
The final member’s story was from John Thatcher who demonstrated that people with KC can reach for the stars! He was diagnosed with KC while still a physics student and also needed a transplant. He recently retired from a high flying career which culminated in being the Project Manager for the Mid Infra-Red Instrument (MIRI) going on the James Webb Space Telescope (JWST) due for launch in 2018. As John said, having KC didn’t stop him from being responsible for the most advanced optical instrument yet devised, which will provide data on distant galaxies and newly forming stars.
Q&A session with Susie, Ashleigh and John
Unfortunately, we do not have the slides referenced by Prof. Buckley in his presentation.
This talk, by Professor Roger Buckley of Anglia Ruskin University was ‘KC Then and Now’.
The slides for this presentation can be found in this PDF file.
Mr Stephen Tuft, Corneal Consultant at Moorfields talked about ‘The causes of KC’. The latest prevalence figures for KC are calculated as 1 in 1,620 people, though it is four times more common in those with a South Asian heritage. Early diagnosis of the condition has become more important with the availability of CXL to stop further progression.
The following factors have all been researched as potential causes of KC: biomechanics; ultrastructures; environment; enzymology; proteomics and molecular genetics. There have been various false starts in research, but it is known that the tear film is different in KC, the biochemistry is different, as is the distribution of collagen fibrils in the cornea.
The dramatic increase of myopia (shortsightedness) worldwide has resulted in a lot of money going into myopia research and this has brought a greater understanding of KC (for example, the length of the eyeball is longer in KC than in people with short sight). Researchers are now looking at how the genetic code is being read. The message flow goes from DNA to RNA to protein to structure, but teasing out cause and effect is still a big issue. There is no single gene linked to KC – several genes have been linked to corneal curvature or thickness but much work still has to be done. The hope is that there will be a simple genetic test in the future to identify those at risk of developing KC. Mr Tuft concluded by saying that the medical profession needs to be better at anticipation rather than treatment.
The conference ended with a talk from Ken Pullum, principal optometrist at Moorfields and Oxford Eye Hospitals. His session was called ‘How has KC changed over the years?’ It hasn’t but everything else has... Ken talked about the variety of contact lenses for KC and the peak of contact lens developments in the 1990s. While in 1991 there were only young people attending Moorfields contact lens clinic (older KC patients just gave up with the hard lenses available then) in 2016, the patient demographic resembles the national age distribution and 50+ years of contact lens wear is not unusual. Practitioners’ attitudes have changed considerably – for example, patients are now offered spare contact lenses on the NHS. But so have patient’s attitudes which Ken summed up as “I’ve got a problem, I want it fixed, I want it fixed now, I’ve been on the internet and I know more than you”.
Ken thought it was unlikely that there would be major changes in contact lenses over the next 30 years, so the KC Group can’t declare itself redundant just yet!