Hi - Im New To This - My Story

[GarethB]

My KC has been stable for 2 1/2 years.

There are more than just RGP lenses, but of RGP there are many styles which suit some more than others.

There is Kerasoft (a soft lens)

Soft perm; an RGP lens with a soft skirt with many subtle variations on this theme.

Piggyback; which is where you wear a soft lens with an RGP lens on top.

Sleral and mini scleral; basically covers the white of the eye.

Many of us have been told that one lens is not suitable without them even being tried only to find once pushed and a particular lens option is tried we get amazing results.

The moving lens you describe suggests you need a better lens fit and the piggyback system would be well worth trying.

Are you being seen at the hospital or hight street optom for lenses?

Without my lenses i am legally blind in my right eye and partially sighted in the left, wothout lenses the only thing I can not do is drive. Everything else regarding work and homelife continues as normal with only the most minor of adaptations. Since my KC took a downward turn in 2004 I have still managed to work fine and get a promotion.

[lou]

Hi Mark

I havnt worked for 10 yrs im on DLA and incapacity benefit.

Over the yrs ive had the odd stumble on the stairs (2 broken bones ooops) and a few burns (not bad ones) from the iron/cooker (the clothes looked worse after id ironed them for some reason ).

My vision has become very bad and my consultant said that my grafts would have been done yrs ago if it wasnt for my other health probs BUT finally that day has come the 5th June is my 1st graft very nervous/excited im looking forward to getting my sight back again.

Ive always said that if i had been blind from birth i wouldnt know any different but to have your sight and have it taken is the hardest thing BUT not the worst thing.

I enjoy life i have a wonderful hubby a beautiful daughter and a fantastic family what more could i ask for.

With luv
Take care
Emma xxx

[debbieo]

Hi, you asked my age so I'll tell you - but don't tell a soul please.

I'm 39 - going to be 40 in the summer. I was just diagnosed with KC at Christmas, although now I know a bit more about it I can see that all of my sight problems have been down to mild KC all along, which was so mild to be below the optoms radar and they preferred to call it astigmatism.

I only started wearing glasses aged 21. Stayed with them for ages cos I couldn't face lenses. But I never got 20/20 vision and some days were rubbish even with the glasses on. I spent a lot of time at the computer and some days I couldn't bear to look at it - yet I knew some of my friends had astigmatism and didn't have that problem.

I tried soft contact lenses and they were rubbish - wouldn't stay in place at all, and I found them really uncomfortable. So I gave up.

I only found out I had KC when I plucked up the courage to go and get my eyes lasered. I was turned down for surgery straight away and so began the path that led me here....

Scared the life out of me at first, especially when I came on here straight from the laser clinic and saw some of the more severe cases. But now they know I have KC, I can get sympathetically fitted lenses (with an NHS subsidy - yay!) and I've got the best vision of my adult life.

[Mark Osborne]

Hi to all

Been a busy day at work. You all are being a real help in the information you have given me. and i can understand now that ever case is so different.

And i may be wrong to say this, but im new to it all, but has technology moved on. I mean my right eye is my worse - but i can see with glasses okay with my left eye, which has kinda taken over.

Well my consultant is saying that i could have a graft on my right eye, sorta now i guess, im only 23, and i wouldnt class my case to be as bad as some of the members.

Is it that now Dr's understand KC more, they are happy to do the grafts early on to get it out of the way and reduce the time you actually have active KC?

Of course my thought is, well if im not that bad do i have the graft, bearing in mind the side effects of having an operation on your eye - does that make sense??

Spk soon

[GarethB]

Mark,

At the AGM's and confrences there always seem to surgeons wanting to operate sooner and optoms wanting to stave off operation for as long as possible.

With a graft, about 2/3 need glasses and the remaining 1/3 need contacts which came out of the last AGM. Some need no vision correction but that proportion is quite small. Plus data on graft survival is debated too. Some data suggests 90% last over 10 years and other suggests 80%. Proffessor Buckly said the collation of such stats is hard because many post graft end up being seen at regular high street optoms so are not studdies long term.

My grafts are 20 years old and fine as are many others within the group, I think we even have a member who's grafts are fine at 40 years!

Never regretted having my grafts, but I would say that as lens technology is far more advanced than it was 20 years ago and surgical techniques are much improved too there is much to be gained by trying all lens options first. Only 10% I think ever actually need a graft, the rest cope fine with glasses or lenses for the rest of their life.

If you cope with glasses now, my question would be why risk a graft and possible end up having to wear contact lenses?