UK Keratoconus Self-Help and Support Association

Hello folks,

I stumbled across this forum whilst looking for some up-to-date info on keratoconus and thought that you may be able to provide me with some answers with regard to more recent developments in this field.

My sight rapidly started to deteriorate when I was 20 and I was diagnosed with the family eye condition, keratoconus. After being referred to the Eye Clinic at my local hospital I had a corneal graft on one eye as they were unable to fit a contact lens due to the amount of curvature.

The graft was successful and after about a year when the stitches were removed I was fitted for gas permeable contact lenses. I had a lot of problems with my first fittings irratating my eye and causing the lid to swell (although this could be partly down to my ineptitude at putting them in) but eventually a pair was produced which were more comfortable. However I never fully got on with the lenses and as my other eye's vision was still quite good at that point I didn't wear them much except for occassions where it really made a difference e.g. going to the cinema, instead opting to wear my glasses and this occassional wearing tailed off as time went by mainly due to how long it took me to put them in and they variability in comfort.

Some times I would put the lenses in and be able to forget they were there, other days it was an endurance test with them being uncomfortable from the moment I put them in. Using hypromellose eye drops helped reduce discomfort which occured due to the lenses drying out when wearing them for longer periods but it was always a gamble which way it would go when I put them in. However they always made a vast improvement to my vision in either case.

Well 10 years have passed and my other eye's vision has now deteriorated to a point where I am basically relying on the grafted eye when using glasses. Anyway my glasses broke last week and when I went to put in my lenses, (I hadn't worn them for quite a while) I discovered that one the lenses would no longer stay centered on my eye. I have now got my GP to refer me back to the Eye Clinic and am awaiting an appointment.

Ultimately if I ever want to be able to drive (or not guess where the shuttlecock is at points when playing badminton etc.) I will have to wear the lenses but I am hoping it wont always be an endurance test.

What I would like to know is have there been any recent (last 10 years) developments in the field of contact lenses for dealing with Keratoconus?

Thanks for any info,

Richard

Hi Richard,
Suggest you try scleral lenses. They are not new, except in terms of the materials used, but produce great correction for KC both in grafted and non grafted eyes. I wear them post graft, because I could no longer tolerate hard corneal lenses on the flatter grafted cornea. I tried soft perms but only got 6 hours a day wearing time and lots of tears. Sclerals have proved very comfortable, with only occasional problems and mostly 12 hours a day wearing time.
If you cannot find anyone locally to fit you, suggest you get a referral to Moorfields.
Best wishes,
Janet

Thanks Janet,

I will look into them (no pun intended). Reading through these forums I see people are talking about Mini-Scelerals and you mentioned Soft-Perms which AFAIK were not around when I was last fitted. I was always under the impression that any sort of soft lens was out because they didn't exert enough pressure on the eye to remain in shape so I am a bit unclear as to how these work.

I am a bit heavy lidded so I am unsure how easy it would be to put in scelerals or even mini-scelerals but I will ask my consultant about these and soft-perms when I see him.

Thanks,

Richard

hi Richard,

I was wearing softperm lenses untill my right eye could no longer tolerate them due too increasingly distorted shape. They are a hard lens with a soft outter ring which improves the comfort and stability. I found them very comfortable untill the end, however I have recently started to see a new consultant who is very anti softperms, there is some danger that they reduce the oxygen to the cornea as they fit almost too well or too tightly and can cause blood vessels to grow there, which may cause problems with furthur attempts to graft.

You may also wish to ask about a lens called a Rose K2, it is a rigid lens but the size and fit can be varried greatly and i have found untill recently that it can be made quite comfortable on even a reasonably badly shaped left eye.

Righto hope that helps, if it doesnt make enough sense please ask questions!
Sophie