UK Keratoconus Self-Help and Support Association

Hi Mojdeh,

I burried my head in the sand whilst most of you guys kept positive and tried different thing

From my 25 years experience of coping with KC I can relate to were you are coming from.

There are two areas to deal with when the KC bombshell is delivered:- the physiological and the psychological.

I have been fortunate, my KC is mild in both eyes and has remained relatively stable although now I will have to use contact lenses as my vision has now dipped to below the driving limit and using VDUs for work has become difficult.

I tried contact lenses at the start and my experience was the same as yours. What really spooked me though was no optom or optho would give me an assurance that the
the lenses would not aggravate the condition.

The impression was that they did not know, "every case is different".

I found whenever I went for a consultation it was a negative experience and I never felt that my condition was being monitored or recorded. The surgerys were full of old people, long waiting times taking half a day or even a full day on occasions!

I was advised that there was nothing I could do which would influence the development of the KC.

I felt that it was a waste of time and effort going to consultations and decided on the irresponsible crisis management approach using glasses or no vision aid if I could cope without.

When I read some of the outstanding and remarkable contributions on here I feel that I have been fortunate so far.

There is no quick fix solution for KC yet, but with the onset of the info superhighway and websites like this there is much promise and hope for a breakthrough and better/more advanced contact lenses.

The longer you can delay the necessity of having intrusive eye surgery the better imo, especially as surgeons/consultants gain more advanced techniques and experience.

Good luck at Moorfields and do share with the KC community here the eye care you receive there.

Mo

All the best when you go to see the doc. I am sorry you have travelled such a lonely road; for many of us the forum itself is to be thanked for keeping us focused and positive.

Even if you took a little while to find the forum, we are all glad you did!

Yours aye

Andrew

Mo
I have had a lot of difficulty recently with getting used to RGP lenses - but my latest experience at Moorfields contact lens clinic (Thursday just gone) was brilliant. I was given a lot of chair time and the optom took the trouble to listen to me. So when you go, you will no doubt be referred to the CL clinic - don't be afraid to tell them of your problems with le nses previously and explore alternatives with them. I was quite "green" when I was first seen in November last year, but through the info posted and support of people who post on this forum I have learnt what to ask and when! Fingers crossed I am hoping to get new lenses now in a couple of weeks which will be comfortable - they certainly were on Thursday!
So please don't give up this time round - and don't be afraid to keep going back until you find lenses that work for you.And don't be afraid to ask for help through this forum too!

The down side is you may have a long wait at the clinic - but that is probably becuase they were spending the time with someone else just like you and me!

Good luck in April.

Mo

thanks for asking: I got on wonderfully well, and can see pretty well even now with no correction.

In fact I think I can probably see well enough to drive, but I will wait until I have been checked and they have given me the official "all clear". Then I have to go through the procedure with the DVLA to report my surgery and wait for them to confirm that the "all clear" covers driving!

Andrew