UK Keratoconus Self-Help and Support Association

I’ve had KC for several years now and have tried RGP’s – which I was intolerant to, piggybacking, which also didn’t work and now the next phase is hybrid lenses.

I’m seeing my ophthalmologist at the end of the week. I want to tell him that I have had KC for years and I’m getting nowhere with treatment. I know that he probably has patients who would be glad to have my sight. But I am really struggling. I’m less able to use the computer than I’ve ever been before without extra extra large fonts, even then my eyes tire quickly. I’m walking into doorways and tripping on stairs because of my eye sight and I struggle to recognise faces as I can’t see the finer details.

It’s impactimg on my work and personal life and it’s very frustrating. I know there are loads of visually impaired/blind people out there who ould be glad to have my sight but that doesn’t mean I should have to put up with it.

I am looking for some advice when I'm speaking to the doc. I know that I wont get to see him again for a while so I want to be as direct as possible and explain it to him in a way that he will udnerstand how much this is effecting me.

Any advice??

Louise

Actually, contact lenses are not a 'treatment' for keratoconus as much as they are a way of managing the condition.

it seems to me that you have a pretty good handle on what you want to say to your ophthalmologist, but I wonder whether you have fully exhausted lenses. Even if you go from management to treatment, you may have a bit of a wait.

I found sclerals kept me going while I was waiting for my first surgery and I know of lots of folk here who have benefited from soft lenses for KC.

That said, make notes of what you want to say to your ophthalmologist: finding lenses difficult to cope with, frustrations in personal and professional life etc. Ask about treatment options.

Every good wish. Let us know how you get on.

Andrew

Louise,

I've just read all your previous posts and I agree with Andrew that there just may be other lenses you could try.

From your previous posts I get the impression that your eyesight has got worse over the last few years, so one thing you could do is see if you could get a pair of glasses that could give you some vision while you are trying to sort out a pair of lenses. They won't give you the vision that contact lenses could, but they might just help.

Lia

hi louise,
i know how you feel. sometimes the specialists give advice based on standards of vision...rather than the way the vision affects your life. when you speak to him/her- refer to functional vision- talk about how it affects your life.. sometimes the vision they measure is not real... in a controlled office environment there is no ghosting and the letters are easier to recognize... in reality when they are all bunched up, or backlit etc it is impossible. i found myself in a position where my vision on paper was 'okay' but i found it too difficult to drive and do other critical things related to my job... at my age and at a critical part in my career i needed decent vision to live my life, and by making this clear to my opthalm we managed to find a new solution.
keep fighting for what you need.