UK Keratoconus Self-Help and Support Association

I was diagonised with Keratoconus at 14 years (male)and was prescribed glasses! every four months my vision would change
and new glasses where needed! (mum and dad where not too pleased)!!!!!!!!!!

At 19 the situation got worse and had to have first cornea graft...........however with being so young they decided to experiment
with a new graft and flatten or reshape my old cornea and place new transplanted cornea ontop!???

result was embedded scarring and poor vision, however I kept going, with information from the doctors that this would go!???
(never did)

At 22 the other eye needed doing and had conventional cornea graft with huge success!!

contact lens became very much part of my life............

then decided after years and years of hospitals, doctors, etc, wanted to start my life.......felt 100% with the
new graft at 22.

(up to this point my life was just hospitals, and had not really had a settled job because of my eyes)
when the post office (employer) found out at 19 that I need a cornea graft transplanet, could not get my out the door
sooner!! rushed to get rid of me..........
huge impact across the board with confidence, friends and work, really everything had been delayed till I had that 2nd
cornea graft at 22, any way life did begin!

life became more settled and normal! after 22.

Anyway in 2007 my contact lens ware began to fail, and was told that both my cornea's had become thin
(was then told for first time that average life span of cornea graft is 9 to 10 years)
I was now 42!!!! done well over that!!!!!!!!!!!!!!!!!!!!!

also the pleasing fact that Keratoconus had not returned! the grafts where worn out!!

So on September 19th 2008 had my first new cornea to replace the old one and replacing original
cornea ( embedded scarring graft) that I had at 19.

Still waiting to see a result, as I know its going to be a long haul again............
may need other eye doing shortly.........

its funny....... life has turned full circle again! but am use to it, because thats all I know!!

am happy to pass on my experiences to anyone!
as the above is only a tiny part of the story!!!!!!!

can say its been a battle! and battles with hospitals, optisions, and the state!

if am honest, you have to fight to get anything done, still be waiting
for the NHS to sort me out! had to fight from the very
begining, and had lots and lots of battles along the way.

but thats life.

Despite what you ahve been through you come across as a very positive person.

The debate of how lomng does a graft last frequently comes up and it seems afetr 10 years most consultants are no longer looking after their patients but it is the optometrists.

Both my grafts are 20 years old and going strong, for me I've been told the KC has come back in the host cornea in my right eye so warping the graft but we do have many members ho grafts that are far older.

At least now there are many more management options for us compared to when you and I started down this lengthy road (we are of similar ages) plus this group has turned my life round four years ago. I hope you find it as beneficial as I do.

Welcome House! And good luck with your new graft - I hope it gives you much better vision than the old one. Just to add to what Gareth said - we're not just a web-based group. If you'd like to be on our mailing list for Conference DVDs and other info, do e-mail me with your postal address anne@keratoconus-group.org.uk
My grafts were in 86 and 88 and still going strong - but it's always good to know that they can be redone if need be.
Anne

House,

All the best with your new graft.

Andrew

thanks very much!

at least I have had the experimental graft sorted! and conventional surgery done
finally!! the right op.