Finally officially diagnosed with keratoconus...

[CrippsCorner]

Hi guys, been a while since my last visit. Unfortunately I was unable to log in after the forum went down, but finally I received a re-activation email so here I am!

Since then a lot has happened, including a lot of mucking around by the NHS... but there you go. Ultimately after being referred a few times I finally saw someone who knew what they were talking about, and he has officially diagnosed me with keratoconus. Luckily for me, I only started noticing it this year, when I turned 29, so I'm hoping the condition isn't going to escalate as bad as many others have it. I had a scan to read the cornea thickness levels (is that right?) and they will do another in 6 months time, to see if I'm eligible for CXL. I thought I was going to be under a huge CT machine, but it was only just bigger than a normal computer!

Up until now I've managed simply with glasses, however driving and watching TV has become progressively difficult. The 'specialist' in the NHS told me just to stick with them... but imo I'm a danger on the road, so I booked myself in for contact fitting. My optician and I came to the conclusion to go with Kerasoft to begin with. As I said, the keratoconus is reasonably mild with me, so I'd like to avoid RGP lenses for as long as possible, maybe forever! You never know. I'd love to hear some personal experiences with Kerasoft if anyone wants to share.

Question... over the first 6 months of getting my first glasses prescription it changed a lot. The original one simply becoming useless. The other day I had another test, and it's progressed again, but much less this time. I understand that keratoconus does slow down to halt eventually. What I'm wondering though, is can it slow down, and then increase in speed of deterioration again at a later date?

That's it for now, but I'm sure I'll think of more questions soon, thanks for reading!

Oh and a special thank you to Anne who gave me great help over email whilst I was unable to get on the forum...

[Grant]

What I'm wondering though, is can it slow down, and then increase in speed of deterioration again at a later date?

In my experience, yes. I went from new glasses every year to every six months, back to year - even managed 18 months at one point - and then back to every six months at most, sometimes three.

It was at the point that I didn't feel I could drive even with the new glasses and went for lenses. The NHS started me with RGPs which I couldn't get on with at all but after trying kerasofts I had a very successful three years with them.

[CrippsCorner]

That's a shame! Thought things were looking up there lol...

Can I ask what you did after Kerasoft lenses and how old you were at these different stages? Thanks.

[Grant]

Diagnosed in early-30s, started wearing softs three years ago at 41, changed to RGPs earlier this year at 44 but ended up with abrasions pretty soon after so have now moved on to piggybacks for the last month or so.