UK Keratoconus Self-Help and Support Association

I have had K.C for a few years but it has never really bothetred me I have other illness which takes up more of my life as K.C does not hurt etc... I have not given it very high priortiy..... I have been managing well with glasses until this year..... I was refered to the eye hosp about 5 years ago but they and given soft lens which did nothing then given hard lens which I only sort of played with as they were not comfy and a fiddle etc... they hosp contct lens bod and I did not see eye to eye as it were!!??!! and being in wheel chair he had to move his room about for me which caused much huffing and puffing!!! I did not get apps through and rining them up was an endless task so I gave up..I kept on with my specs with changing the scrip every year.. This year I went and my right eye had got a lot worse but optican said it was ok not to worry and gave me a new script anyway sight in my right has got a lot worse and at the mo with glasess dont have much useful sight. I went back on Monday and saw another optican who went a bit mad saying I should have been reffered back to the hosp in april. and worte a letter to G.P asking for a urgent referal..... he did say I could lose the sight in my eye but reading your front burlb about K.C u say u dont???? so a bit confused. I also have had caterats done in both eyes..... would this effect me being able to have grafts .....and can grafts be done under a local rather than a general..... I know from b4 it takes about a year to get into the system and see a consultant and get the lens.... so I have found a private chap who fits at another hosp... ( not the one I was at b4) is going to fit them for me till I get into the N.H.S system.... any hel pon my questions I would be grateful as I say I feel a bit of a fool as I did not try harder with lens etc,,,

tadiehatley

Welcome to the forum.

You can become legally blind through KC. I did. If that happens, help is at hand; when I was legally blind I agreed, after years and years of procrastination, to have a graft; first in one eye and then in the other. I am now able to see well enough to drive again!

It may be that the time has come for you to put up with the daily fiddle of handling RGP lenses, although if they are not suitable for your particular case there are loads of other contact lens options that can be tried.

You probably did the optometrist's soul good making him work outside his own comfort zone in order to accomodate your wheelchair. In time he may even say 'thank you'.

All the best

Andrew

ps by the way, there is no reason to feel foolish. Never forget that you are the customer and the ophthalmologist and optometrists you see work for you. You are the one who makes decisions about the management of your KC, and their advice is a valuable resource in the process by which you make up your mind about what is going to happen next.

Thnaks for the info it is nice to know others are out there.... K.C seems to be a bit strange condtion I must admit as having several this one seems to be the oddiest!!! I am sure I will get to grips with it and i will be a bit more pushy (if they have to re arange there room) with them as I was new to wheel chair use as well.... thanks agian

Ho hum

I have a pal who has KC and is in a chair. He takes no prisoners. If he goes into a consulting room in the hospital that is not wheelchair friendly, he will send a leaflet to the hospital setting out their opbligations to patients who are in chairs

Also, if he is attendind a mobility clinic where he cannot read ths signs, he is quite likely to post off stuff from the RNIB outlining the mobility clinic's obligations to patients who cannot see well.

All the best

Andrew

HA HA I will bear that in mind next time I go..... It might make the app a bit more fun!!!!!! to say the least!!! thanks for letting me know