Me, Myself and Keratoconus

Whilst I am waiting for my transplant next week I thought it might be a good idea to give a bit of my history with Keratoconus aka KC.  As previously described in my first post on this blog I covered in general what KC is.  One thing I didn't mention is that KC generally affects 1 in 1000!  If only my parents had put £100 bet on that before I was born, would of been a tidy sum!  I have been trying to think when I first was told the condition I have is KC.

As far as I can remember I was prescribed glasses from around the age of 10 I think.  And in like most cases with children, the doctors at the time advised if I wear them it was highly likely I would not have to always wear them.  Well they got that completely wrong and there it began.  At the time I was living in Germany within the British Forces due to my parents.  Therefore once I was diagnosed with KC around 13 I think the British Army NHS sent to me to a specialist in Germany.  I was fitted with soft lenses to begin with and they were absolutely fine for around 3 years.  But it got to the point where they had to move me to hard lenses, (RGP lenses)

And WOW putting plastic in your eye for the first time that is hard and not soft is horrid!  I hated it, I really did but after a few weeks of building them up time wise I tolerated them and me and my hard lenses lived a happy life up to around the age of 18 in the year 2000.  During the years of 13 to 18 I visited multiple German Specialist Eye clinics in Munster, Bielefeld and Gutersloh for ones that would fit.  I have lost count of how many maps of my eyes I have had done!  From what I can remember at the age of 18 or so a specialist in one of those places mentioned Cross Linking but for whatever reason it never went any further than that and my memory escapes me as to why.  I do know that if my wife and I ever have children I will have him or her checked early on for the onset of KC as there is so much more they can do now.  Like I have read and heard from others KC is often missed by Doctors by I would like to think awareness of KC is much higher now.

So where did it all go wrong at 18?  I remember this time of my life well as was working for the British Army in my summer after college and before returning to live in the UK.  It had just got to the point where I was really struggling to tolerate the hard lenses, the comfort, the wear time was extremely low.  Most of the time I avoided wearing them when I could.  The final thing I remember being told by one so called "specialist" is that with my severe KC is likely ill never be able to drive!  Not many years after that I passed both my car and Motorbike licences, id like to see him again :)  Upon returning to the UK in 2002 I was sent to the famous London Moorfields Eye hospital for further fitment as at that time the new modern eye hospital in Norwich was not built yet.  They did their best for me at Moorfields and I kept trying new lenses but to no avail.

Looking back is ridiculous how I used to cope.  I went to University in 2003 and for 2 years before the transplant I struggled daily with hard lenses, only keeping them in for lectures I knew I had to see the screens at the front.  I recognised the buses I needed to get to University by waiting for them to pull up at the kerb, would then squint to see the number on the side.  There was no way could read the front of the bus.  This next bit is good too, I worked for The Royal Mail from 2002 to 2005 (British Postal Service)  I did not deliver but I sorted mail.  And at that time I could not tolerate lenses, I coped though.  If you can just make out the number 1st Class or 2 Class or International mail there's not a great deal more to it.  If any mail got miss directed I apologise, plus this is also where I met my wife so cant complain too much :)

Pre 2005 socialising was always fun too because I could not tolerate the lenses I essentially was walking around partially sighted.  Before my transplant trying to find your friends in a local pub was not easy and any chance of trying to attempt a conversation with a nice young lady was near impossible as they could of been anything between 18 and 60!  In hindsight I should of made more people aware of my KC and not been worried about asking for help.

In 2005 came the Transplant and even though fingers crossed I have a excellent looking graft, the vision was a bumpy ride, and Ill cover that another day this week.  Hope I didn't bore too many people, good to see more followers on Twitter @cornealgraft

Take care all