UK Keratoconus Self-Help and Support Association

Hello, my names Emma and I've just discovered this website!!!!!

I've had KC for just over 10 years now, but only found out how to spell it a few months ago! I was about 15 when a problem was detected, and have worn lenses ever since. Since moving to lincoln about 5 years ago, I have learned a lot more about KC with my lovely contact lens specialist. But just lately, I've been having a few problems, and just wanted to see if anyone has had similar experiences and also to have a rant about it with people who can actually empathise!!!!!

I've been having 'blood vessel' problems, where the vessels are starting to get quite close to my cornea to feed it with oxygen while my lenses are in, which resulted in a lovely pink eye about 5 weeks ago. I saw a charming specialist at the hospital who gave me a ton of drops to put in and I finally was able to put my lens back in that eye this weekend, but am now back to pink eye again. Going to my eye clinic this afternoon.

After reading a few posts I don't think my condition is as bad as many peoples, for example, with my lenses in I drive, don't have any probs reading or anything really, its just when I have problems (like today) that it starts getting me down. Without lenses, my right eye is considerably worse than my left, I can't see the top line on the chart. Its generally my right eye that plays up, so am still able to wear my left lens (just have slightly 'wonky' vision) but don't feel able to drive when its dark like this. Which, working at the other end of town and it being this time of year, becomes quite restricting. My employer has been fine up to now with everything, but everyone has limits.

I thought a graft would solve the problem, but again, after reading other posts I think that may be wishful thinking! Going without my lens to rest my eye is obviously the right thing to do, but restricts what I can do, which bugs me so much. I have always been fiercely independant and hate relying on my hubby to drive everywhere when its dark (just had a jolly to france and he had to do all the driving - solid 6 hours bless his socks- because I couldn't see properly) I just hate going without one or both lenses, I don't feel like me and it actually makes me quite withdrawn. (does anyone else feel like that or am I a bit strange?)

Obviously, many of you have very bad eyesight all the time, which makes me feel guilty about having a rant about my time without lenses, but there you go!!!

Thanks for putting up with my rant!
Emma x

Hi Emma,

Welcome to the forum. It is not un heard off for blood vessels to grow to towards the cornea in any contactlens wearer. One cause which KC'ers are guilty of is over wearing lenses so gradually the corena becomes starved of oxygen and has to get a supply from somewhere.

This is why most optician recomend wearing lenses for between 8 - 12 hours per day and preferably with a rest day during the week.

Also as we can not see without lenses we tend to wear lenses when our eyes are irritated with the lenses in.

I now go by the rule, first sign of discomfort out come the lenses however inconvenient that might be.

Sounds like you have cought it early so fingeres crossed you will be OK.

Regarding grafts I have had 2 and am pleased Ihad them even 20 years on. The rpimary goal of having a graft is to provide a corneal surface where the sight can be more easily corrected. This is usually with glasses or contact lenses.

It is for this reason it is saved as a last resort when all lens options have been exhausted.

Emma

All the best at the eye clinic. Vascularization is a problem with wearing contact lenses.

Let us know what the ophthalmologist says.

The graft is probably a last resort, but should not be discounted when other things have failed. I do not regret either of my grafts, and shall always be grateful to the families who dontated corneas for me.

Yours aye

Andrew

Thanks for the replys!

Back on drops again, and back to the clinic on friday morning. So no lens in my eye again!

So, in theory, if I were to have grafts, would i be able to correct my vision with glasses rather than contact lenses? Which would mean that to rest my eyes of the lenses I wouldn't be without decent vision.

Also just wanted to say that I think I've learned more about KC on this website in one day than everything my consultants have told me in 10 years! Thanks guys!!!!!

Emma

Good to see that you find this place!

Can I ask what lenses you use now?

It may be worth now posing the question "what other lens types\designs" can help me....if you have vessels growing, than thats clearly not good....and there are other lenses which may help stop this problem occuring.....

HTH

J

Hi Emma and welcome!
Did you spot the 'Keratoconus at Work' leaflet that you can download from the main site? Might be useful to give to your employer to explain about days when you can't wear a lens. And we're not just a website - if you'd like to join our mailing list and receive other literature from us (our 2005 conference DVD is about to go out to all mailing list members) do e-mail me with your postal address at anneklepacz@aol.com
Anne

Hi Emma,

With a graft or anyother surgical intervention with KC, there is no guarentee that your sight will then be corrected with glasses alone. There is always an equal chance that contact lenses may still be necessary.

Emma,

Hello there and welcome to the forum!!! So glad that you have found us as you can get a load of information, ideas and support here!!

You know i think it must be a name thing as my twin sister has the same name and has had KC for over 10 years and still can't spell it!!! I did post a little poem on here a long time ago to help us with spelling! LOL!!

Leaving lenses out when your eye gets red is the best thing to do. It will let your cornea get more oxygen and rest your eye so hopefully it will heal quicker and you can wear lenses again! If you leave it until it is too late you are doing more damage to your eye.

It is ok about having a rant that is what this forum is for!! A lot of friendly people here then come along with sympathy and loads of ideas to help you solve the problem!! Hehe you know the saying a problem shared! LOL!!

It is hard when people don't understand but it is obviously to be expected if they don't have the condition! I hope that you email Anne and give her your details as you will get a lot of info and regular newsletters etc. Also the employers leaflet is brilliant as it explains everything to them and why you can't always wear lenses to see!!!

Take care and hope to see you post here again soon!

Sweet X x X

Hi Emma

I know what you mean about learning so much from this site. I was diagnosed in the very early 80's but have learned far more since I joined here than I did in all the years previously.

I have two what I consider very successful grafts and wear glasses but I am not totally KC 'symptom' free. They are not a cure but for me have minimised the impact of KC on my life. I had a terrible time with my lenses and ended up being totally unable to be fitted with any so when I chose to have them I was in a 'what have I got to lose' situation. There are lots more choices now - I was amazed at how many when I joined here - so have a look at all those before you seriously think about a graft.