Dougie’s Story

I’m 27 and live in edinburgh and was originally told I had KC when I was 12 years old I can remember it well as I was surprised being told I had this strange condition that I’d never heard of, before being told by my optition that I had nothing to worry about. Looking back at the memory and knowing what I know now I would have called up my GP myself as a 12 year old child and demanded a referral straight to the ophthalmic department but because at the time I had excellent vision in both eyes the optition thought it best not to act so quickly and watch it progress. Because I was told not to worry it was as if i was being told not to act and so I never. 

Over the following years as a teenager my sight never bothered me at all and even right through my early 20s my sight was my last thought. I would occasionally make a booking at the optitions and mention I had KC – every time – but because my right eye (my good one) was so good, time after time I was told not to worry. Not at any point until my mid 20s an optition told me what KC actually was and told me I should be careful but again not to worry. She told me she would write a letter to my GP but nothing ever came of it never got any information of what the condition could lead to

At this point it seems like I was acting naive however it’s important that despite one optition telling me that I had KC there was no real protocol to follow once I knew had my condition and that it was serious. At that stage I had no symptoms and no real worries.

From my early mid 20s to last year (mid 2016) I had absolutely no symptoms other than a slight ghosting in my left eye when driving at night, something as that point I almost considered a novelty. 

Unfortuanatly 2016 was a stressful year for me. My gran had just died at the tail end of 2015 and the toll it took on my parents was tough. My mum has Alzheimer’s and her condition progressed markedly with the toll evident on my dad, my business which I run was kicked out of its premises unexpectedly and my grandfather suddenly passed away adding on more stress. Soon after my parents house flooded and meant I had to go home several times a week to help care, all while planning a wedding for early 2017. The stress was unreal and lead me onto serious anxiety and depression which thankfully I have worked through, but, during this time my KC dramatically progressed. Walking home from work one night I had a panic attack and woke up the next morning with prominent floaters and flashes in my eye which to this day haven’t stopped. Along with this my blurriness increased the ghosting worsened and I developed a slight double vision in my left eye. At this point I was at the optitions twice within a month but to my astonishment there was still no advice given on my KC or any information on a referral. In the may of 2017 I went to my GP to describe my flashes and floaters and KC symptoms to her. After 12 weeks I got sent to the eye pavilion but to the wrong consultant, a retinologist, who helpfully told me my retina was totally fine but who refused to cross refer me to a KC specialist because he claimed there was nothing on my referral letter from my GP about KC. He made me go back to my optition and wait another 12 weeks to be seen by the right person this was in late July 

Thankfully by chance in the January of 2017 I met an eye surgeon who was genuinely called Johnathon Ross who had told me about collagen cross linking and all about KC, how glasses never really worked that well and how contacts were generally the option to go for. All of which had never been described to be before. I emailed him after I noticed the flashes and floaters and he recommended I went to My Mantry at laser vision out at shawfair. I went in to see him in early June, got told my coronal thickness was a fraction away from being inoperable by cross linking and by late June had received cross linking, all be it £2500 out of pocket, all before my shambolic NHS effort.

My NHS appointment with the right consultant finally came in November 2017 and I got referred back down to a great optometrist, Ian Cameron, for scleral lenses. 

Unfortunately despite improving my vision greatly I am getting bad ghosting in my left eye even with the lens in and am now at the stage of looking at Intacs for my left eye, I’m going for my private consultation next week at Ayrshire eye clinic as it will now be March or April 2018 before my NHS followup before they probably tell in codes form to just go and pay for them myself, like they did when I asked them about cross linking for my right eye.

In conclusion it is my opinion we should start to create some awareness of the need for proper screening and awareness. It’s not fair that you seem to have to know the right person with the right contacts to get the bright timely treatment. KC can be life changing and these days it doesn’t need to be in a well functioning system. With proper eye scanning and screening they can tell if your eye is displaying KC symptoms well before many of the super negative effects kick in. I was unlucky but reading this forum and personal experience it seems that way too many people seem to have their KC progress while the time critical nature of the condition demands swift treatment for the best long term outcomes. 

That is my experience up to now with KC and hope it was insightful into my tale up to now. I’m very interested to hear what people have to say about their experience with Intacs as after my research they offer a bit of hope for me. Further more, my good eye (right) has very mild ghosting and I’m considering getting cross linking in it but am unsure. I’m 27.5 years old and technically on the limit of the progression of the disese so to my knowledge don’t have much to worry about progression wise. I don’t want to risk surgery on my 1 good eye but will go for it if I think it will stop any possibly progression from this point…

Thanks In advance for your thoughts

Dougie

Douglas Shaw » Sat Dec 09, 2017

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