UK Keratoconus Self-Help and Support Association

Hello, I have just joined this site today- amazing being able to read about other people with KC, have never met or even read about anyone else with the condition before so it's great to beable to compare experiences!
My question is to the older members of the site, or people who have been diagnosed for a long time. I'm 19, nearly 20 now, and have had the condition since being about 13. In 6 years the sight in my right eye has got progressively worse so that now without my hard contacts my vision is an absolute blur in the eye. However, my left eye has been virtually unaffected until recently when, although I can still see OK without contacts, the vision is definitely getting worse. My opthamologist has said that now I'm reaching 20 the condition should start stabilising, so why is this deteriotation happening now? And for those who have had the condition much longer, did their condition stabilise as they got older or is it still possible to deteriote rapidly at any time?
I would be grateful for your advice!
Thanks, Carli

Carli

Welcome to the forum.

It is unusual for KC to progress much as you get older, but it is not unknown. I postponed having any surgery until I was into my 50's, and in the end the thing that occasioned the surgical intervention was my becoming intollerant of contact lenses rather than any progression of my KC. I lived for over 20 years with what my ophthalmologist described as severe KC, but as I was still able to get good correction with contact lenses I decided that I'd hold onto what I had rather than take any risks with my sight.

It may be that your left eye will move towards catching up with your right and that both eyes will stabilize so that you will never need surgery; the truth here is that each case of KC is unique; there are trends that can be observed over many patients, but each of us retains the potential to be the one that stands out from the crowd.

All the best; and well done on having foundus. You make our little community richer by being here!

Andrew

Hi Carli and welcome to the forums.

From what my consultant told me when I was referred to him after being diagnosed KC in November 2005, it is rare that KC progresses in patients older than their mid 30's. It is possible that your KC will progress to some extent but not as severely as it did whilst in your teens. The progression curve is exponential

Karl

I did not develop KC until my mid thirties but it has deteriorated fairly steadily over the two years since then, particularly in the worse eye but also in the other although it trails by a significant margin. My brother, however developed his KC in his teens and it has stabilised in his twenties (there is only a year between us). I think my brother's is a more normal profile and maybe what you might reasonably expect but we are all different. Maybe this latest detrioration is the last flourish? However, you have to be prepared for whatever may come. I had eczema as a child and was told it went in 7 year cycles, so every 7 years, I wondered if I would be rid of it....In the end I satisfied myself that I would grow out of it at some point and sure enough, I did.
Best wishes,

Hi Carli

Welcome to the forum.

I was diagnosed with KC in my early 20's but probably started in my late teens , I am now 57 and whilst there have been minor changes my condition remains mild/moderate and I think the statistics suggest ,
that at my age, it is unlikely to get much worse now.

Michael

At one point this forum was populated by the extreme cases of KC, now I feel the more general KC population is being represented.

After my grafts I thought my KC had gone, but at 35 it was diagnosed again in the host tissue the graft is attached to and progression was rapid over a coupe months. Since then satble for last 3 years.

It is imposible to say that it will or will not stabilise which is why we ahve either 6 or 12 month checks to monitor the situation.

I would recomend doing as I do and take things as they come. My KC has never held be back from anyhting since being diagnosed 20 years ago.

Started Degree in Micro Biology registerd partially sighted, graduated with good corrected vision post graft. Done motor sport at semi pro level after diagnoses, had just started when KC diagnosed.