UK Keratoconus Self-Help and Support Association

Hi - have just been told i have keratoconus

Bit worried as having now read up on it a bit - am unsure - does it always get worse, does it stay the same. Will i HAVE to have surgery?

Really confused - have been told mine is the rare form cos my cornea goes up and down!!
and is very mild at the moment.
Im 34 - no allergies and not aware of it being genetically inherited - so why does it happen?

Any comments.advice gratefully received!!

Hi Sarah

Welcome to the forum.............

Well youve come to the right place to share and learn from everyone here as we are all in the same boat in one shape of the other!

To answer your questions

Does it always get worse?

Im afraid noone can answer that question...some have mild KC for many many years with no advancement in the condition and others have agressive progression from like 0 - 4 years and need surgery!

Its a completely unpredictable condition...how are you dealling with it now? Lens? Glasses?......what prompted the diagnoses? did you find your vision getting slightly worse?

Jay

Hi Sarah
On the face of it, as you are 34 and have very mild keratoconus, the chances are it'll not progress much- you are simply too old! Are you able to get good vision with glasses or are you going to be fitted with contacts? I am wondering if there has been a recent deterioration or KC was picked up during a routine exam. What symptoms are you having? If you are coping well with/without specs I wouldnt worry too much about it.

Its strange enjoying being too old for something!!!
Apparently when I had my eye test 12 months ago - it was picked up then, as I have very bad short sight and recently, astigmatism.
Last year, I noticed ghosting around letters on things such as TV screens.
2 weeks ago, on my yearly eye test, my optician told me I have very mild keratoconus and it was noticed last year, but the optician didnt want to say anything at the time!
Anyway, I am currently OK with glasses, although my left eye is worse and the optician said 'thats as good as i can get it'
He did say worst case scenario is corneal graft etc etc.
What he did say that concerned me was that last years eye test results were dramatically different from 24 months ago - can it just happen like that? well obviously it can!

My left eye definitely feels as if the spectacle prescription isnt quite right and my eyes feel strained when im drivin g- but this could be cos im more conscious of this KC now and am looking for things i am not usually aware of - if that makes sense.
I was just surprised to get it at 34 - when I read about it it said between the ages of 10 and 20!! But thats life i suppose - thanks for the replies so far!

Hi Sarah
It sounds like you have late onset KC which is quite rare, but I still feel it's unlikely to progress very much.It's quite possible that you have had a very mild,subclinical form of KC for a long time which hasnt affected your vision, but ,for some reason, has shown some progression in the past couple of years.Have there been any changes in your life which might account for it eg childbirth ? Do you suffer from any eye allergies or dry eyes resulting in eye rubbing? It's all a bit academic really but it's interesting to know if there was a trigger

Hi Sarah, and welcome to the forum.

Just thought I'd answer an important question that you asked that noone else did!

Sure, at worst case, you could need a graft. Note the words in bold. Even at worst case, not everyone has to have a graft. Most people with KC will never face that possibility, except when initially informed of the condition by their optician, who will probably not see very many KC patients, and it seems that some opticians just really have the wrong idea about the condition!

As for your KC being rare because the cornea "goes up and down" - well, very few of us have smooth, conical, corneas (despite the name). It's the wobblyness of the corneal surface that leads to most of our problems, and I'm sure it's a characteristic of KC!

Anyway, we often hear that the later in life that KC is diagnosed, the lesser it will progress. Whether this is true or not I don't really know. Let's just hope that it is (mine wasn't really diagnosed until about 30 either!).

All the best,

John

well i dont overly rub my eyes - but what about using a mobile phone too much - i read in the telegraph that excessive phone use can cause the cornea to bubble - erm,,,, i talk a lot, such as 16 hours a month on a mobile.
Dont know if that could be it.
No allergies, nope.
Im just odd
Thank you for all your replies - really good to get all this support - making me feel so much better and calmer - thank you

Hi Sarah

I'm massively older than you at 35, but have known about my KC since my early 20's.

I have mediumish KC (to use my sort of layman's terms), I use RGP lenses (hard painful ones), but to be honest you get used to it.

I do always feel so genuinely sorry for folks who first post on here having just found out about KC. It really is not the end of the world, and most of us cope really well with it.

Ahem....am I the only one who 'uses' it a little when I really can't be bothered reading the kids bedtime stories tonight???? Ahem does that make me wicked.

AHHHH...there has to be an upside to everything.

One things I would advise though is if you're still in specs (as I am sometimes) buy lots of pairs (Specsavers buy one get one free) and keep them at strategic points around your life.

I have a pair in the car, one in the lounge, one by my PC and one by my bed.

Make it all easy for yourself. The daftest thing I do, is if I have a particularly comfortable lens day...forget I have them in and put specs on too...then wonder what's happened to my sight??? Dohhhh..

Anyway welcome to the club.

Hi Sarah

I used to be a sales rep and coule easily spend 16 hours a week at least on a mobile and that never agrevated my KC. The peak radiation given by a mobile is in the first few milliseconds it makes a connection and starts ringing. Then the radiation produced can barely be distinguished from that which is al around us.

I have had KC since I was 17 and am a few years older. One of the problems I have found over the years and reinforced by 'new comers' to this site is that when KC is first diagnosed, the opticians appear to be very alarmist when putting information across.

In their defence they may be well balanced and in the shock of it all GRAFT sticks in the mind and everything else is lost. It might be an idea as the support group grows, then funds would allow for the KC group to do a mail shot to all optoms as the direction tp oint people with KC so at least new people to the condition do not feel quite so alone.

As John says, grafts are not that common, and as Jay points out KC is unpredictable. It has ot cause you any issues and the improvemnet in vision can be achieved with contact lenses of one sort or another. If your optom is not a specialist in KC and lens fitting, most hospitals seem to have lens specialists too. The lenses can be uncomfortable but if the KC is mild as it is in my left eye, the lens comfort has not been a real issue.

Good luck.

Gareth

Hi Sarah & all

I don't want to panic anyone here however I am not sure I can agree with the age thing.

I was fine all the way through school and only started to wear glasses for driving at 17 over the following years glasses wear increased to all day to correct short sightedness by the time I was 21. I also had some soft contact lenses which were just for vanity going out at night, managing fine with the glasses at all other times.

I had my little boy at 29 and another pregnancy that ended in miscarriage when I was 32 maybe ths has some bearing on things I don't know.

However, after having had ghosting and needing a frequent change in prescription over about a year I was advised I had KC in Nov 2000 by this time I was 5 months short of my 33rd birthday.

I want to say at this point all of us are different and my circumstances and case could quite well be unusual.
I managed initially with glasses for 2 years and in May/June 2002 was moved to RGP contacts, which for me did not work and after around 9 months I was fitted with sclerals. The sclerals took a long time to come through appointments, fittings and all, I had them by June 2003 (after initial fitting in early Feb 2003). For 12 months I was ok and then back in May 2004 I started to struggle again resulting in both eyes needing refitting. I am currently waiting to have the left eye refitted again as at my last appointment vision and fit was not good.

As I said before we are all very different and I may well be quite unusual however I am now 37 and at last appointment the hospital agreed with my feelings that my eyesight had deteriorated quite quickly and yes I am a little OLD for such KC progression.

Hope all goes well for you, I have learned to adapt and cope well. Yes I have had to make changed and currently can't drive however, I have found the hardest challenge to be getting others to listen/understand. You see I look ok, no obvious signs of problems and with lenses in can get about although wearing time is limited.

best wishes

Susan