UK Keratoconus Self-Help and Support Association

Hi everyone!

I haven't written much on this forum, mostly I just read what's going on.
I have a question though. Yesterday I went to see my eyedoctor and she said that KC normally stablize when you're around 30.Does anyone know if thats so? Is there any reserch on it? As i understood it it is very individual and kinda hard to know how KC progresses on diffrent people.
I was diagnosed with KC the year 2000 but as I know now I had it erlier but it was corectable with "normal" contact lenses. In december 2000 I started wearing RGPs and when I couldn't wear them anymore I got SoftPerms and when those didn't work anymore I had to start with piggyback. Which still works for me. The thing is that since january I have had to change the RGP in my right eye I think 5 times or so. It doesn't seam to me as it is stabilizing. My right eye is not as bad as my left eye (as what the doctor sayz). But my left eye doesn't even give me half of the trouble as my right one. I don't really know what to do cause everytime I ask my doctor or my optican anything it feels like they are just waving me of. They just say that as long as I can get good vision with contacts there is no problem. But for me it is a problem! The only thing I have is those contacts. Without them I see nothing. Enough of me pittying about myself.
I want to thank everyone that writes on this forum. It has helped me alot to know I'm not alone, even though I wish no one the troubles that comes with KC.

/Cissi

Cecilia

This is often said, that KC does not progress as much after mid 30's however I think this is open for debate.

I think this was the general thought in the mid-late 1990's however now it may not be soo true....depending on who you speak to.

I think KC is a very bespoke and individual disease and once the trigger has been set off, it progresses depending on various other factors. This is merely my own opinion however, as at this stage we really dont know the cause of this disease....

Hello Cissi

KC does seem to be very different from one person to the next.

I myself was diagnosed in Nov 2000 and initially managed for 18 months or so just with a new pair of glasses. I had however at this point been struggling with soft lens and glasses for about 2 years following the birth of my son in 1997.
At diagnosis I was 32 and was told it was later in life than expected for KC to develop. However, as the past few years have gone by I have often wondered whether maybe I had the KC earlier however it was just managed with the contacts/glasses to allw me to function.
Now at 37 (38 next April) things still are progressing and for me over the last 3 years rather rapidly. It was around June 2002 that it was suggested I needed RGP lenses however after approx 9 months of fittings and several different lenses this didn't work and by Feb 2003 scleral lenses were tried. These initially seemed to be just the thing although after just about 12 months wear my eyes started to change again and I am now on my 3rd lens for my left eye and my 2nd in my right.
Sadly vision is not what it used to be however, I manage and just about find a way to get around most things, when I put my mind to it.

So as I said I certain feel it is very different with us all however for me, quickly approaching 40 (2008) things certainly don't seem to be slowing down at te moment.

best wishes and keep us posted with your progress

Susan

I was diagnosed at 17 and my KC was quite agressive and resulted in two grafts by the time I was 19.

Last year at 35 KC came back which is extremely rare. The graft is KC free, but the cornea it is attached to has developed the KC again. It stabalised for about 9 months and the past four months it has been gradually progressing to the point I may need surgery again if the visit next week can not fix the problem with a lens of any type.

KC is so unpredictable and I think so little research has been done on KC in later life that we can not say for definite if KC slows at any age.

Cissi

I started with Eyesight problems, light sensitivity etc. in my thirties and finally diagnosed at 37, now 41 and the progression is not showing much sign of slowing, got big corneal rgbs which I can't wear at the mo and need my prescription changing in my glasses too, I can manage at home but am struggling in crowds/transport etc.

I think your eye doctor was relaying personal opinion, like Gareth said KC is so individual and there have been very few studies etc. that a lot of the medical proffession (even some of the ones in my eye clinic), express anecdotal or out dated opinion, and each time I go I get different opinion sometimes conflicting.

I've learnt not to worry too much about progression, I have a now 12 year old daughter and worry I won't see her properly when she's performing on stage or collecting certificates later but I have to stop myself dwelling on it.

Take care and yes this forum is a lifesaver!.

Tam

hi cissi,

i was diagnosed at 14, though i never passed an eyetest ever, i have worn lenses now for over 25 years and my KC did seem to slow down when i was 28/29; but just my opinion i think everyone is different and KC does progress in some people who are older than 30.

as for the feeling the doctors/optoms create, i think most of us here have been made to feel like that from time to time; i remember when i went for a medical at 17 and the doctor asked me to read the eye chart; my reply what chart was treat with total contempt; i was so upset. i begged my consultant to put me forward for a graft but his response was not while we can correct with lenses. 20 years on i accept that lenses even though far from perfect are an easier solution than an operation that is not guaranteed success, i know for some the graft is for the best; so until i am unable to tolerate my lenses i continue to accept them as my solution to gain vision.

i understand you frustration that some of the medical profession just don't seem to appreciate how important our lenses are to us; i have very blurred vision without them and totally panic when one falls out; at the moment having a spare pair is not an affordable solution at over 80 quid per lens.

Cissi,

I was diagnosed 5 years ago at the age of 45. It has progressively worsened since then.

I think you have been incorrectly advised, maybe to make you feel better (?).

It does stabilize for a while every so often but it is unpredictable and will accelerate alarmingly over short periods before stabilizing again.

Hi Cissi
I think everyone's posts show just how unpredictable and individual KC is. To confuse you even more, I was diagnosed at age 11 and have worn scleral lens for over 40 years, having been told a graft or transplant was unavoidable in one eye or the other four times but always found an alternative with lens.
For all I know surgery may have been a better option at any of those points, but I chose to keep that option until it was the only one available. Haven't got there yet.
Anecdotally I have heard it said by some professionals that you may have continued stability if by mid 40s any deterioration has slowed or stabilised. Other posts show that is not always right. Its not very helpful, but I don't believe anyone has a clear answer that would apply to all.

Like Tammy and Susan I had no problems until past thirty and was then told it was just astigmatism. It gradually got worse until I had a graft in one eye though the other may have plateaued now.

Just a few comments...

Classically, KC is active for about ten years. Obviously, some people fall outside this generalisation and it may be fair to say quite a few end up on this board. I am just saying that because many people who watch this board but don't contribute can get quite worried by what active members say!

Very many people with KC only progress a little and stop - and in fact may never ever get diagnosed. As I mentioned in another post, I worked in a community (Trinidad) where KC is very common and it was clear, from every professional's heightened awareness of KC, that there were many "sub-clinical " KC'ers around who seemed not to progress at all.

Now this may lead to speculation that a stressful event - like childbirth - may cause a sub-clinical KC to kick off again. Frankly, there is just not enough information. In Western countries, KC is rare enough that research is difficult to do and in the less developed world, where KC is often more prevalent, there is not the resources to do the research.

Many researchers now think that KC is more common than previously thought... as in mild KC has not been classified properly. Many people are now turned down for laser surgery because they show strong signs of being KC.

Cissi... opticians say what they do because there is not any easy answer to KC. I do wish with all my heart there was!

Lynn