UK Keratoconus Self-Help and Support Association

Our West Mids organiser, John, is the lay representative on a panel setting the future clinical research strategy in ophthalmology, specifically in the area of cataract, optometry, refractive and cornea. Priorities were last set nine years ago, when the KC Group contributed to an exercise run by the charity Fight for Sight. At that time research into the efficacy of CXL was high on list. Now CXL has become standard treatment for early KC, what should research concentrate on? Work continues on developing stem cell treatments, but what other research would make a real difference to you and the effects KC has on your vision? We would love to hear from you and feed the views of patients into this exercise. This time the research strategy is being developed by the National Institute for Health Research (NIHR) which is one of the top funders of eye research in the UK, so the results will have a significant effect on what research gets funded in the future.

OK, a few suggestions to start the discussion.

1. Work on earlier diagnosis, building on the excellent research by Howard Maile, maybe through a screening tool for use by high street opticians. This could lead to a better understanding of the true extent of KC in population groups. Early intervention may avoid poor long-term outcomes and increased ongoing costs.

2. Continued research into synthetic corneas.

3. Comprehensive monitoring of graft patients to better understand rejection events and how to avoid them.

Graham

Id personally love to know if theirs a link beween conditions such as fibromilgia and M.E (chronic fatigue syndromme) causing interferance and or rejection episodes in grafts and also slower down of any infections etc

Id also like to know how common corneal filiments are within our community as their is so little out tehre about them

but wider speaking Id like to see people dx sooner so they can have CXL quicker so they don't end up as affected as many of us have been

I'm with Graham on being supportive of stem cell, synthetic cornea research, and graft monitoring, I feel one particular past episode of rejection wasn't picked up early enough despite me presenting.

I also support Space Cadet on links to other conditions and assessing the scale of the filaments condition.

I would like the psychosocial to be better addressed ie additional registration available to cover our condition with variable impairment ie before/after grafting/complications, and with and without lenses we can be at opposite ends of the chart having struggles with them in.
There's no formal recognition of this. I find it ridiculous that for those of us reliant on 1 eye, using a symbol stick when unable to wear it, or those with highly limited wear time, have no recognition at all unless an optometrist recognises it and writes a letter.
So either change registration to include variable impairment or develop a template letter for optometrists to use on patient request.

I'd like to see better chart testing for us developed because guessing between O,Q, C, 0, in clinic doesn't translate to daily living where a driving examiner would not accept a guess.

Lastly graft and re-graft survival rates, the UK needs to collecting our own stats.