UK Keratoconus Self-Help and Support Association

Hi there, il try and cut it down as it's a long story.

3 yrs ago I was diagnosed with keratoconus. Rendered to the hospital, and ultimately have ended up with hybrid lenses (what I'm very happy with, it improves my vision to a very acceptable level).
In general at home etc I don't use the lenses, they can become uncomfortable and my eyes can get very dry

If I'm wanting to nip down the shops etc, I'd rather just chuck on some glasses, I've been to specsavers twice and BOTH times the glassed I was given were terrible. If I'm honest I felt they made my vision worse to the point it was like being drunk!! I can't stress how terrible they were and clearly made my vision worse.

It just so happens that a friend of mine has keratoconus, and one day I thought I'd try his glasses on and amazingly, BANG they improved my vision, I could read writing on a board that I couldn't without them. I've copied his prescription and I've been using his prescription for 6months.

I don't want to waste more time and money getting more glasses at specsavers, does anyone have any experience of problems like this? I just don't understand how they can get it so wrong! Im hoping I could get even better vision if it was my own prescription tweaked to my own eyes.

Hi Johnny and welcome,
While glasses very rarely give as good vision as lenses unless the KC is very mild, it really is very useful to have some glasses to use as 'back up'. The trouble is, most high st opticians see very few people with KC and so don't have the expertise (or maybe the time!) to prescribe glasses for us. One option would be to ask for a glasses prescription from your hospital eye clinic. Or have a look at our list of KC friendly opticians http://www.keratoconus-group.org.uk/optoms/index.php to see whether there's anyone there near you. Don't give up. When I needed glasses, I went to my local opticians and explained that I had KC and that I'd probably need a long appointment. I was lucky - the optom I saw had done her dissertation on KC so was delighted to see me! So there are good optometrists out there.It's just hard when you have to spend the money to find out whether they're any good or not.

Get your glasses prescription done at the hospital, that's what I do and you get the added benefit of getting it for free!

I did already try at the hospital with my general eye check up (yearly). I was told to ask the contact lens specialist (mr Akay who's on the KC fitter list), after a 6month wait I was then told by him that it's not possible to switch a contact lens prescription into a glasses prescription.

I guess il just have to insist with my yearly eye check up that it be done? I just don't want to come across as some DICKHEAD when they're trying to help me.

jonnyh132 wrote: it's not possible to switch a contact lens prescription into a glasses prescription.

That's correct. You would need to get a glasses prescription from the Refraction Department. The prescriptions are different - if you've a high minus prescription you would probably find that the glasses prescription has a higher minus value than the contact lens prescription.

The hospital I attend usually sends people back to the High Street for eye tests. And like you I've had a few pairs of useless glasses over the years from High Street opticians.

One reason for my apparently "useless glasses" is that I didn't realise that after not wearing glasses for years (I have a high minus prescription) it would take time for my brain to adapt to seeing through glasses again. Yes, I was told that it'd take time to adapt to the glasses, but it was wearing the glasses for an hour a day for weeks rather than days before my brain had fully adjusted. Initially I found walking across the room wearing my glasses difficult as everything seemed to swim around.

The prescription you have would have been based on your answers to the "better or worse, or about the same?" questions. I think that most people's prescription can be found from answers to these simple questions. For us this is not always an easy question to answer. I've often replied that some of the letters are worse and some are better. I can sometimes feel the exasperation of the person testing my eyes when I give such as response, it's as if I'm giving an impossible reply.

As Anne has said you need to find someone who understands keratoconus and is prepared to spend additional time testing your eyes. Fortunately I have now found someone who understands KC and is able to give me a longer appointment to optimise my glasses prescription and after my "some letters better, some worse" response understood what I meant and managed to find a lens that was indeed better.

jonnyh132 wrote:I just don't want to come across as some DICKHEAD when they're trying to help me.

I think we all feel something like that sometimes. What with my "about the same" answers at the High Street opticians when they are trying to prescribe glasses. Or when I go to the hospital for a contact lens check and I admit that I normally wear my old lenses as I don't like the news ones they spent ages prescribing at my previous appointment.

CrippsCorner wrote:that's what I do and you get the added benefit of getting it for free

If you have a high prescription with a power in any one meridian of plus or minus 10 or more dioptres then you can get a free NHS sight test on the High Street.

Lia

Cool... didn't know that! Does help that I work about 15 meters away from the hospital's eye unit though lol, so it's always going to be my first choice.

CrippsCorner wrote:Cool... didn't know that!

Yes but the high powered glasses aren't so cool! Even with a small frame and high index lenses the lenses in my glasses are about ⅜" thick.


Lia

Yeah, one of mine sticks out from the frame. I got a thicker frame the second time round and now you really can't tell that much