UK Keratoconus Self-Help and Support Association

Hi, I was confirmed with keratoconus 3 days ago. At the time I couldn't think of anything to ask the optician but I've got a few questions now. Looks like there's lots of interesting and useful information on the FAQs which I shall have a good look through over the next few days. My main worry is how quickly does the condition develop? - I realise that there's likely to be a lot of variability but are there any general rules? The optician said that it develops more quickly in youngsters than the middle-aged. I am 37 - how long have I got before I go blind?!! - or rather, before I need a cataract transplant.
Ann

Ann you may never (and probably wont ) need a corneal transplant. Only about 10% of us do. How fast and how far it will progress really cannot be answered. It varies for everyone. It is good you found this site so quickly because it is a good resource, but don't be to scared by our stories because this site tends to have kcers who have had a lots of issues and new kcers looking for answers (understandably) so bear in mind there are many more people living with KC each day who do not have all the problems we have mentioned. Good luck and if you have further questions we are a friendly bunch happy to offer whatever support we can.

Hi Ann

welcome to the forum, and well done for finding us and plucking up the courage to post so quickly.

It took me ages - but this is a very friendly place and you will find some very well informed and helpful people here.

You must still be is a state of shock. I know I was. Even though I new my eyesight was changing so suspected something was wrong it was still a huge shock and I am sure no one here will be at all suprised that you sound a little panicked.

In truth I cnnot answer your questions - time from diagnosis to various stage points seems to vary hugely dependent on a number of factors - age, severity at time of diagnosis, ability to tolerate contact lenses, sight achieved, luck,who you are seen by, the list goes on.

I have been diagnosed for about 7yrs and grafts have not been mentioned yet (except to say I may need one in the future). I have KC in both eyes - right more than left - but can still drive, manage my job and mostly carry on as before - Which is not to say I am unaffected or that I don't get scared and upset sometimes.

There are others here who are far better informed than me, not least because they are further on this journey. Listen to what they say and take both warning and comfort from them. However your experience is your own and you must follow your own path. Some will recommend surgery, some lenses and some will suggest more interesting and unusual possibilities. I will only recommend that you read, consider and decide for yourself.

Sorry I cannot be of more help - and now I will get out of the way while those with more useful information swing into action

Brigid

Ann

Welcome to the forum!

You were right in assuming that its different for everyone....it really really is!..it may not progress for years and years, OR never...or it may!...Noone, not a single sole on thsi earth can tell you otherwise....

I can assure you that you will not go blind in the sense that you are saying...you just wont be able to see clearly....without correction, or even with in advanced occasions.

One thing I will say, is that on this board you may see posts from people whom have had a rough time with KC and have had the Corneal Transplantl; thats the extreme case....and many dont even come close.....so I hope that kinda eases your mind a little....

Oh, and you shouldnt nede a cataract transplant...itll be a corneal transplant....but I would even start to think along those routes..as its not necessary!

What can you see now? With and without glasses \ lenses?

One thing I will tell you though, and Im not sure how many on this board will agree.......NOW is the best time to get KC! (well NOT getting it is the perfect option! but you know what I mean!)...as you def wouldnt have wanted to get it 10 years ago!...The treatment options and lens designs available to cope...are numerous....and thngs just seem to be developing everyday!

HTH

Jay

Anne

Welcome to the forum, if it is any comfort, you are the same age as me and my KC in both eyes has been stable for 2 years.

There is every possibility you have developed KC to a point it can be diagnosed and it will then remain pretty much unchanged for a very long time.

As a straight answer, I developed KC at about your age and had a corneal graft about 10 years later. Can't remember the exact dates. The results of the graft were excellent and I've not had any problems with it whatsoever. I've no idea how typical my case was; would be nice if we had access to figures.

Gareth, you've had grafts in both eyes already haven't you - or am I getting very muddled?

Barney,

Yes I have and after 20 years the old cornea the graft is attached to developed KC 2 years ago so pulling the graft out of shape which is extremely rare.

Having said that KC episode 2 has been stable for 2 years.

I am considerd special at the hospital I go to as some opthalmologists with over 20 years experience have never seen a case like mine.

The opthamologist who did my graft has seen a few and the main consultant I see has seen some cases, but if you combine the experience of all the specialists I have seen recently is comes to about 150 years experience and they can count on one hand the number of cases like mine.

Hi Ann

Personally I think the key is being able to accept that no matter how much you read or how many doctors you see you are never going to know what the future holds for you and your KC.

I'm a fine one to talk as I found my way here when I went into panic mode about my daughters having KC, and I've also spent a lot of time in the past worrying about myself.

I remember how scared and uncertain I was when I was first diagnosed, but looking back over the years since then the reality hasn't been that scary - just frustrating and a whole bunch of other things.

Take care.