New member

[Lisa Nixon]

My specialist at Royal Liverpool kept me going with Kerasoft pre graft and I'm pretty sure they can be used post graft - they are sort of soft but specifically made for KC - I'd have been really stuck without them. Tubs

[Andrew MacLean]

By no means all ophthalmologists agree to the use of any sort of contact lenses after a graft. Mine is pretty much opposed.

Andrew

[tommy.dean]

Hiya all sorry for the slow reply
Jay yeah may name was tomied on kcenter i remember your posts aswell, I wear an rgp on my left eye (operated) which they started fitting in october of last year so it was around 15 months post op, yes i do still have stiches remaining 15 i think well ive had one taken out which broke in the 1st few weeks post op. The transplant has taken the cone of KC away but my cl fitter is still stugling to find a fit still, but i am not being to inpatient about it becouse i know how long cl's can take to fit and get used to wearing. Yeh at the moment i dont use any lenses so its big resolution on the commi screen, sitting rite infront of the tv, lookely my friends look after me alot becouse oveously im not as aware as i should be so they make sure im ok when i go out, work was harder tho other than that i just walk around asif there was nuthing wrong not really much else you can do.
David im sorry but i dont really have a view on corneal grafts but my best advise is get a few opinions off consultants becouse (most) of them no what there on about. I had my graft when cl's were no longer an option at all, and i was told my cornea was dangerously thin. Hope that helps.
andrew i think every1 with KC shouldnt use contact lenses round christmas i get some crazy effects when looks at crimbo lights lol.
james i hope my app goes well too but i never hope for too much dont like building myself up for falls but i do think they will be able to make one lens fit better. how do you see out of glasses? and are your 2 grafts in both eyes?
emma what i got told about soft lenses was there was more chance of infection but i know people who were them and clean them under the tap and alsorts an there fine, also do you work or are you in education?
Anyways thankyou all for the replys i will try my best to contribute to this forum as often as i can, for now its time to start gettin ready for my mandatory sat nite out so i'll be gettin the magnifieing mirror out lol anouther advantage to not wearing contacts is everbody looks like they have been airbrushed so people look alot prettier who needs beer gogles when you have KC hope every1 has a good weekend
tom

[jayboi2005]

Welcome to the forum, im new as well but people know me already i HOPE! I have been asking lots of questions and each and everyone of them i have had good answers to. Come along to the conference in London if you can,

anyway im Jay im 17 by Manchester i knew i had KC 3 days ago Wednesday. So its all new to me!

[Sallyuk]

Tommy ,

Welcome to the forum I am sure you will find it very interesting and useful . I am getting lots of answers to the questions I post in order to understand this disease a bit better . It would appear that your KC is much more advanced than mine and that makes me sad given your age . I struggle coming to terms with this thing at my age, although I have probably had it since my late teens, I don't think I would have coped as well as you or be so understanding - your a star . I am glad that you are making contact with KC people of your own age too who can help support you - it makes you feel a little less on your own .

All the best and I am sure we will probably chat again soon.

Sally

[Andrew MacLean]

tommy.dean

Hope your Mandatory Saturday Evening did not disappoint. Every good wish with your lens fitting. Stay in touch. I'd rather wear lenses if at all possible, but my Ophthalmologist is very much opposed.

I'd be interested to know how you get on.

Andrew

[tommy.dean]

hiya
jayboi hope you are ok if you only just found out recently i hope nobody takes this the wrong way on this forum but dont let the stories on here scare you too much im sure there is people with KC who go through there whole lifes whithout it causing too much of a problem but all of us on the internet are the ones who it is causing problems so we talk about it if you know what i mean.
sally thanks for what you said i think i have coped well becouse i am quite a chilled out person also i like living too much to let it get in my way.
andrew yeah my sat nite was good as usual maybe drank a little too much but it doesnt matter now
talk to every1 soon tom

[Andrew MacLean]

hiya
jayboi hope you are ok if you only just found out recently i hope nobody takes this the wrong way on this forum but dont let the stories on here scare you too much im sure there is people with KC who go through there whole lifes whithout it causing too much of a problem but all of us on the internet are the ones who it is causing problems so we talk about it if you know what i mean.
sally thanks for what you said i think i have coped well becouse i am quite a chilled out person also i like living too much to let it get in my way.
andrew yeah my sat nite was good as usual maybe drank a little too much but it doesnt matter now
talk to every1 soon tom

Jayboi

Tommy is right! Lots of folk go through life coping perfectly well with KC. some never need contact lenses, most never need surgery ...

All the best

Andrew

[jayuk]

I do agree with both...however what Id also add to this is that fact that many dont come out of there shell and speak about there issues because they dont know of KC and also they dont know how to come out and air these issues.........

Whilst I agree that alot of stories on this board show the other extreme side of advanced KC and grafts...I really do think that there are a high number of people out there with KC who dont even know this place exists....

[Andrew MacLean]

Jayuk

I am sure you are right. For years I had no idea that there were other people with KC. It was a source of considerable strength to me that when my condition advanced and I was no longer able to wear contact lenses this site existed.

At that time I was put on the register of blind and partially sighted people, and armed with information gleaned from the previous board I was able to contact the local sensory impairment team, have my accountant get in touch with the Inland Revenue, and gain all sorts of support from the Access to Work team at Jobcentre Plus.

I still need to use the equipment they helped provide.

This site is an important resource. it is also good for those recently diagnosed to be aware of the possibilities of support that lie ahead, but all that said nobody should imagine that there is an inevitable progression from diagnosis to graft.

Andrew