New here

[jb0o]

Hi,

I'm Jonny, I'm 18 years old and I was diagnosed with Kerataconus at the ago of 14.

Right now I'm not suffering too much as it is still safe and legal for me to drive without and aids and I never wear glasses of contact lenses as although they do make a difference with my vision, I can still see perfectly fine without them.

I am quite stubbon and also arrogant as I don't want to have glasses or contact lenses to help me see, I can do it myself. Or so I like to try and think.

I have recently undergone a brand new procedure called Collagen X-Linking which involved removing the front layer of my cornea, adding some drops and shining a UV light into my eye for a good 30 minutes. So far I have only had this done on my left eye, which has stabilised the condition, which is great. I am awaiting an appointment from the Eye Infirmary to go back and have my right eye treated also.

The doctor told me that even if everything goes fine and both eyes are stable, I will still have to undergo a cornea transplant in about 10-20 years time.

I just joined to know that I'm not alone with this condition and it would be good to get to know people who have to cope with what I have to cope with and how they do it.

Jonny.

[private104]

Jonny

I'm pretty new too. My doc told me I had something scary that would mess with my sight. I was kind of stunned so I started to Google the word "Keratoconus" I guess you did the same coz we both found our way here. Have you found the publications section. It is a great resource.

Keep the faith.

P104.

[rosemary johnson]

Hi Jonny, and welcome.
Well done on finding your way to a CXL treatment. Hope it gives a good result - and the same in the other eye too.
It's not necessarily true you'll need a transplant. SOme people do , but not all of us.
The time at which it may be necessary varies too - I was in scleral contact lenses at age 14, and I've just had my first transplant, at age 46. Bit more than 10 years on.
There wasn't such a thing as CXL in those days, of course, and by the time it came along, that was too late for me, or maybe i'd still be doing fine with my own eye.
Time will tell. If yo are coping OK without glasses or contacts so far, you're not doing badly so far, anyway.
Rosemary

[Andrew MacLean]

Jonny and Private 104

Welcome to the forum to you both!

Andrew

[melissa]

Welcome jonny and P104,

I think we all remember being diagnosed and the confusion. As Rosemary says- everyone is different and the treatments availble now far exceed what was available when i was diagnosed even 9 years ago- and more development happens every day. sometimes even the doctors can't keep up.
Glasses, lenses, piggybacks, sclerals, intacs, CXL, softperms, grafts, postgraft LASIK, .... whatever works for you.

[private104]

this may seem a bit off the wall but you can't know how good it is to know that other people get scared and confused too.

[dweezil1968]

glasses (wish i could wear them, they can't make em strong enough) and lens (can only wear in right eye) help you to see, so if you would see better weting them, then do so, its not a case of 'doing it yourself', and whilst you might think you are ok to drive, you might want a second opinion and some help with your vision.
collagen x linking is still very new and theres no data for side effects in the future, so i too have been offered it for right eye but I would like to have some more tangible data and research first, and until the NHS are offering it its pretty much too new for me to try.
good luck

[jb0o]

Thanks for the Welcome guys

At first when I found out I had this condition it didn't really bother me because at the time I could see fine, so why should it affect me? Only recently have I noticed that I have to squint alot more and find it alot more difficult to focus on things, such as subtitles on movies etc.

The Doctor says I have 20/20 vision still and that I'm safe to drive without aids, for now.

I did try contact lenses but they kept falling out, and I just couldn't get used to the irritation on the eye-ball with them being rigid.

Anyone going to see the movie 'The Eye'? lol.

[jb0o]

Well how time flys!

Thought I'd throw an update out there...

I had the Collagen X-linking procedure done on both of my eyes in 2008 and 2009. I last posted nearly 2 years ago, which was more of a "let off steam" thread as I'd just returned from the Hospital where the consultant had a suspicion that the CXL treatment hadn't stablised my condition and I had to go back in 6 months time to get a full confirmation, to which I rudely didn't update the thread!

I went back to the 6 month appointment to be told good news, the Kerataconus has in fact stablised.

2 years on and I feel that my eye-sight hasn't worsed at all, which is great!

The biggest problem that I've been faced with is getting used to the damn rigid lenses... I was given them 2 years ago and each time I was putting them in I'd find that the only thing I could do was to sit there as the constant stream of tears and discomfort prevented me from doing anything else -- in the end I threw in the towel and subsequently threw the contact lenses to the side and just went on about my life without any lens at all.

My girlfriend has since been pestering me to start wearing my lenses as shes claims that I've started to get crows-feet wrinkles which can only have came about due to my constant squinting! So here I am again, back to the week of hell of trying to get used to my rigid lenses... wish me luck!

[Anne Klepacz]

Many thanks for the update. You're probably the first person to post an update on this forum 3/4 years after CXL (most people seem to disappear off the face of the earth after having the procedure, so we never know how they got on!)
And good luck with the lenses. Are these the same lenses that you were given 2 years ago, or have you been for a refit recently? If they're the same ones, it might be a good idea to check that the prescription and fit are still right for you. And remember that corneal rgps aren't the only lenses in town these days, so if you still find them hard to get on with, do talk to your lens fitter about possible alternatives.
All the best
Anne