As I wrote in the ‘about’ page, Keratoconus is not life-threatening. That being said, it is not an easy condition to live with.
I think the hardest thing is how much KC impacts on day – to – day enjoyment of activities which should be simple to enjoy. Taking a walk in a park, for example, results in a brainstorm of ghosted images of grass, flowers and trees all mixed in a watercolour of white and blue sky in a giant blur. Going to the shops has a similar effect, and if you don’t have the strength on a particular day such distresses can really get to you.
I’m a person who enjoys a lot of visual hobbies; writing, for one, and trips to the cinema another. All are impacted on by Keratoconus; there doesn’t feel like at of escape from a condition that affects everything you look at, especially when the things you used to enjoy doing become the hardest to do.
I remain hopeful that there is a solution for me that will work, and that my own quality of life will improve when I find it. For anyone with KC, I will say please do not ever give up hope- it is not easy, but there are solutions out there. Medical science has improved a lot in this field recently, and there are now more ways than ever to improve quality of vision for sufferers of KC- it’s just a matter of trial and error.
I personally have a brilliant family and friends, and a brilliant wife who is of tremendous support. So too do I owe the NHS my thanks for what they have done so far. There have been and still are frustrations with waiting for movement on appointments, on what feels like a tremendous struggle uphill waiting and waiting for the next step, but that is not the fault of those staff who work tremendously hard to try and better the lives of others, and so for them I have a lot of respect.
I would say anyone in the UK who uses the NHS and has been diagnosed, immediately push for Corneal cross-linking. If they can stop the progression early, then all the better for you in the future. And don’t feel afraid to be a pain – call, write letters, copy in the care trusts if need be- it’s important that you are seen to as quickly as possible. I am certain I would still be a way down the line had I not been a bit vocal. Make them hear you. You’re a person, not just a number.