Help, New and struggling

[dalbeath]

Ok, In Sept I noticed my vision was fuzzy, now 4 months later I have no vision in my left eye. I'm 39 years old so I guess quite old to get KC.

I've had 2 hard lenses but my vision has changed so fast that by the time they have been ordered and arrived they are out of date. That aside both have just blinked out of my eye.

I'm now really struggling and can only manage on a day to day basis by wearing an eye patch over my left eye and jus using my right one.

I have an appointment with a new contest lens specialist next week as my optician is a bit clueless about KC.

Any advice, is it normal to go 'blind' in just 4 months?

[Anne Klepacz]

Hello Dalbeath and welcome to the forum!
Such a rapid progression does sound unusual. But it's possible that you just hadn't noticed how bad your left eye had got. What tends to happen to a lot of us is that the 'good' eye just takes over, and it's not till you cover the good eye that you realise how much the other has deteriorated (and of course, most of us don't think to test our eyes that way).
Was your KC diagnosed at a hospital? If so, does the hospital you go to have a contact lens department which can provide better lenses for you? If you haven't yet been to a hospital eye clinic, do ask your GP to refer you.
There are lots of options for KC these days - a wide variety of contact lens options (not just the standard corneal rgps) and other options such as Intacs for people who are contact lens intolerant. If you e-mail your postal address to anne@keratoconus-group.org.uk there's quite a lot of information I can send you.
All the best
Anne

[Lynn White]

Hi Dalbeath!

It is hard to give advice without seeing your eye or looking at topography maps (these are coloured coded contour maps of the cornea that give information about your corneal shape.

As Anne says, it may be that you didn't quite notice how bad your vision was, as it is unusual to progress fast at 39. You really do need to be assessed by an ophthalmologist to get a better idea of what is happening. You can be referred to an NHS hospital through your GP, though is likely to take several weeks at least.

There is also the option of seeing an ophthalmologist privately and you could do that quite quickly. Most of the new surgical options are only available privately at the moment in the UK.

One way or another, I feel you need to see someone who is more specialised in dealing with these kind of conditions. Perhaps your new contact lens specialsit will be able to advise better once they have examined your eyes.

Lynn

[dalbeath]

Thanks for your reply. It definitely only started in Sept. I had an eye test in July and my vision was the same it had been for the last few years. Also in August I was competing at an International event and I know my vision was good then as I would have noticed.

I saw a different specialist on Monday and they are going to try piggy back lenses, he says that the probs with the hard ones I had were mainly due to dust problems as I live and work on a farm so outside all day in a dusty environment. He has also seen my previous test results and agrees it has come on in the last few months,

So far I have done everything privately as it has all happened so quickly I can't wait 8 weeks for the NHS to give me an appointment.