UK Keratoconus Self-Help and Support Association

I have had KC for about 3 years now and I´m 26 years old. I have lots of trouble and have KC on both my eyes and hard contacts is the only thing that can get me to see well, although my contacts stick onto my eyes and some days I cant wear them more then an hour. My doctor told me that it soon will be possible to get a laser surgery to get rid of KC. What I wonder if what you have heard about it and if anyone already got this kind of help.
I am from Sweden and I have never actually talked to a person with KC and I would like to find a friend with KC to talk on msn messenger or on e-mail. None of my friends or people that i meet ever heard of KC and therefor i kinda feel lonely sometimes and get the feeling I´m "alone" with this problem, so I´m very happy i found this forum.
If anyone would like to add me on messenger, then add: jimmyhoffa99@hotmail.com

/Jimmy

Hi Jimmy

This question has been asked before on this forum and laser surgery is not viable. The reason is that the cornea is already thinned causing it to bulge and laser treatment causes a thin layer of the cornea to be removed. I am not up to speed on the full laser technology to correct site, but there are major concerns regarding the long term benefits of such treatment.

I have had KC for nearly 20 years now and corneal grafts for neary 18. I am now back on RGP lenses due to a rare change in my KC. It is inconvenient with lens wear, but I wear one lens in the morning and at lunch remove it. Before starting work again, I put my other lens in just to be able to see long enough. On bad days where I can only wear one lens, my working day is cut short.

This is a good formu to talk about KC, I have only spoken to a few people, but hope the support group will have another confrence soon so that I can meet a few people.

My e-mail is gdbeynon@hotmail.com, but it is good to put things on this forum so that experiences can be shared with a wider audience and it is possible to get a broader range of responses which might help.

Regards

Gareth

Hi Jimmy,

If you are experiencing so many problems with your rgp lenses then have you looked into the possibility of sclerals? I wore rgpÂ’s for years and ended up having 2 grafts to my left eye. Have now been wearing sclerals for over 2 years with absolutely no problems and 6/6 vision in my left eye. My right ungrafted eye isnÂ’t so good but I am fortunate enough to lead a normal life.

I donÂ’t think laser surgery would be an option. I have heard a lot of KC is diagnosed when people are undergoing corneal mapping to see if they are candidates for lasik surgery. If it is any consolation, my sister works for an American ophthalmologist who runs an eye surgery unit in the States. He himself perform lasik surgery on as daily basis but wonÂ’t have it done to correct his own myopia! His 2 kids and wife wear contact lenses as well!

GarethB wrote:Hi Jimmy
This is a good formu to talk about KC, I have only spoken to a few people, but hope the support group will have another confrence soon so that I can meet a few people.

Hello Gareth,

Well, you're in luck! We're now planning the KC group's 2005 conference (our third). I didn't go to the 2001 event, but at the last one I found that it was amazing - just talking to other people who actually understand what you're talking about, and don't think you're a total loony was quite wonderful!

Thank you all for the feedback. It feels good to talk to people that actually understand what it is alike to have KC. Sometimes I just wish there was a copy/paste option in real life so that I just could paste what I tell the new people I meet. I don´t mind telling people about KC and the situation but i always get the same questions "why don´t you just wear soft contacs, those are good?" and such
Hope you all had a great Christmas and will have a happy new year.
/Jimmy

Hi Jimmy

clinics that do laser surgery also tend to to do 'permanent' contacts (intacts / ferrara rings) that are inserted into the back of the cornea. Although no-one knows the long term effects of this procedure, it looks like these may be successful in correcting milder KC at least. They're currently popular among cataract patients. This could be what your doctor was thinking of.