UK Keratoconus Self-Help and Support Association

Hi Everyone
I havent posted anything for quite a while,but I have had some recent devolpments I'd like to share and perhaps get your responces.
With out going into too much detail I have had KC for a about 12 yrs and have had lenses for about 10 yrs just over the last couple of yrs i have had problems discomfort,ulcers..etc.I got referred to moorfields recently and they said they couldnt get a lens to fit my left eye and would have to either have surgery or try the schericals,which I didnt want.Mr Dart also informed me that I actually had pellucid marginal degeneration (PMD),this I didnt really take much notice of until my hospital visit today(Local Hospital)so I looked it up on the net and was quite surprised.
Iam currently not wearing a lens in my right eye and it seems to be going the same way as the left but I hopefully will get a new lens in the next couple of weeks and it might be more comfortable.

My main reason for writing/posting is to
A. see how many of you have pmd.
B.If so have u had a graft?
C.Was it a success?
D.How did u cope between no lens and surgery
E.And IS THERE ANY ONE IN THE PORTSMOUTH AREA WITH THESE CONDITIONS THAT WOULD LIKE TO MAKE CONTACT PERHAPS IN PERSON FOR A CHAT AND SUPPORT.

Hopefully there will be some replies and some discussions from this as I feel quite down about the whole thing!!!

Many thanks for reading this sorry its a bit long winded
Bob

Hello Bob

Sorry to hear things are not going too well at present.

I am afraid that I can't answer your questions however I wanted to offer my support and also ask why you didn't fancy giving the scleral lenses a try. I realise you must feel pretty fed up with it all by now however as someone in a similar position to yourself and having had scleral lenses since May 2003 (apart from a few months of refitting problems in the last 6 months of 2004) I have found them to be very helpful.
As with all lenses they have their limitations, however my understanding on surgery is that it is not necessarily a guaranteed cure for KC although in many cases improvement vision wise is achieved and in some cases it just gives us a corneal surface that can be more easily fitted with a lens of some kind.

If you want to chat about the lenses I am quite willing. I am also sure you will receive replies from others who have had surgery and also scleral lens wearers, some after surgery.

best wishes Susan.

Hi Bob, I felt exactly the same way as you about scleral lenses. For years I had worn rgp corneals and knew about sclerals but definitely did not want to have anything to do with them! Then the dreaded day came; I had been struggling with the corneals for a couple of years and MEH had patiently tried everything but my eyes just did not want to tolerate them any more after 25 years' of wear. Sooo, they suggested sclerals for which I was suddenly fitted.

When I first got them, it took me about half an hour every morning to get them in without bubbles (amongst lots of foot stamping and tears!) and then when I did get them in, I just felt like a freak! However, none of this lasted for very long when I realised the benefits of wearing sclerals:-

a) Sclerals are 100% more comfortable than corneals - I don't even know I have got them in and I wear them from the moment I get up until the moment I go to bed
b) You cannot get any dust/grit behind the sclerals as they cover the whole eye
c) Sclerals cannot fall out of their own accord!
d) It is impossible to lose a scleral as they are so big
e) The most important benefit is that my scleral lenses have kept me off the operating table, for which I am very pleased

Going from being completely against wanting to wear sclerals, I am now a big advocate of these lenses and think that all KC sufferers should have the opportunity of trying them - even if its just to give their eyes a rest from the corneals. (It was really my own lack of information about sclerals which was making me scared of them).

So, as they say, don't knock it before you try it! Might be worth you giving the sclerals a go and you never know, they may work for you and they may even prevent you from having a graft.

In the meantime, good luck with whatever you try and keep us informed of your progress. SUE

P.S. And I don't feel like a freak any more - that feeling disappeared pretty quickly!

Hi there!
I support all Sue says about sclerals - I LOVE MY SCLERALS and couldn't cope without them. I was lucky and found it much easier than Sue to get used to them including putting them in. I'd been struggling with softperms, which took me ages to insert and were very dificult to remove until I learnt to put saline in my eye first to break the vacuum effect on the cornea. Sclerals were a dream after this. Only a few minutes to insert at the beginning and I wore them 6 hours the first day! Now it takes me about 2 minutes to get them in and mostly I can wear them 12 hours plus a day. Vision is also much better. I never felt a freak or maybe it's just a permanent condition with me, so I'm used to it!!!
Do think about giving sclerals a go.
Best wishes, Janet