UK Keratoconus Self-Help and Support Association

Hi all!

I've just joined the forum having being diagnosed with Keratoconus in my left eye yesterday. When I was told about having it I wasn't that bothered as the doctor didn't seem overtly concerned so I didn't think it was that serious, but once I got home I thought I'd Google it and see what it's really about and now I'm really worried.

At the moment my sight is fine. It's a bit blurry and I have difficulty with reading things in the distance but I just wear glasses for when I'm driving or if I'm looking at something like the board at the front of a lecture hall. I don't need to wear glasses on a day-to-day basis or for things like watching TV or just generally walking around.

I'm 21 and an art student and obviously I rely on my eyesight a lot with the kind of work I'm doing everyday. Is having keratoconus going to effect this in years to come?

The hospital has made me an appointment to see a contact lens clinic but I've also read things about lenses scarring the cornea. If my eyesight isn't really that bad at the moment should I even be going for a contact lens fitting?

I'm so confused! Any help would be greatly appreciated...

Chopstick,
First and foremost, don't worry. The view you will have obtained from your internet research including this forum will encompass the worst case scenario and this may be working on your anxiety. It sounds like your KC is very mild at this time and can be corrected with glasses. If you can, try to concentrate on this reality.
There is no escaping from the fact that KC is progressive but the rate of its progress can vary enourmously. You may experience some degradation over the years but it may be slow and it may not progress much beyond the current state. On the other hand, you may progress to a point, where you are reliant on contact lenses. This may not be a disaster, once you have adapted to the cleaning and storing regimes, you may find that you get a day's worth of very good vision on each day. Contact lens technology is also very advanced and continues to offer ever increasingly confortable wear. Finally, in a minority of cases, surgery is required. These can be corneal grafts or other procedures which aim to create a better corneal surface for correction or even result in good uncorrected eye-sight in some cases. You would be in a minority if you have to have surgery but even then good eye-sight can be achieved. You are long long way away from that eventuality at the moment.
Good luck with your research and try to focus on your current situation rather than assume the worst. Easier said than done, I know. Your doctor's reaction is probably a good guide for the time being...

Thanks for your reply Matthew, it's made me feel better. I know I'm probably just overreacting but before now the most serious thing I've had in my life so far is a cold! It's so strange to have something that's more serious than that.

I'll take your advice and just concentrate on the present - there's no point worrying about something that might not effect me for another 10 years!

Thanks again.

You're very welcome. Its not an over-reaction but a very rational one when faced with a threat to your eye-sight. I hope that you can be reassured that the future with KC may be difficult but not insurmountable.
Welcome to the forum

chopstick

Hi and welcome to the forum. What are you studying, and where? It is possible that there are others with KC at your University.

Go ahead with the contact lens appointment. You may be surprised at how much your sight can be improved!

At least, with a diagnosis of KC, you will always know that there is something that they can do about it. The range of potions becomes wider almost constantly.

Yours aye

Andrew

Hi Chopstick,

I completly understand what your going through because i feel the same as you! I recently found out that i have KC and am worried to. But i think finding this website will help as we can learn from other's experience and advise.

Scary hey all this! Just think going to hospital is going to be part of my life from now on.. but hey at least they know what it is and can try to fix it.

I know it is easier to say than to be done, but don't get so worked up and worried about your KC. As it progresses, there will be new options available to you. Many of us are living with KC with minimal impact on our lives.

As Andrew said, have you been to the university for help with your condition? I did recently, and they were very helpful and understanding, so I definitely recommend it. All the best, and take care.