UK Keratoconus Self-Help and Support Association

Hi im new to this forum and hope everyone is well. I have always had a high astigmatism since a child however only started wearing glasses when I turned 22. I'm 25 now, my prescription hasnt changed much over the past 2 and a half years other than my axis up & down by 4 or 5 and cyl gone down by 0.25 & sph about the same. I have had numerous tests at multiple opticians like specksavers, boots and a independent who all said my eyes were healthy other than my astigmatism. However yesterday I went to a contact specialist to try contacts & he scanned my eyes. He told me i have KC and it was a small amount that is why it has been previously missed. He showed me the scan map which had a small amount of red towards the bottom center with on eye slightly more than the other. He then scanned my cornia thickness which he was confused because it came out about average one eye 493 & one 505 and called his colleague who said its a small amount of KC. My vision currently with glasses is not to bad & I am getting 6/7.5 on the chart with glasses on, as i started wearing glasses so late I it took me a while to adjust but my eyes have finally adjusted to them however now I have this news.


It was very weird because he did not refer me to my gp or give me to much info on the matter even though I was asking many questions and when asked on a scale of 1 to 10 how bad is it he said 1. I tried Hybrid contacts but was getting the exact same as glasses. Can someone advise me please im so scared and shaking & having panic attacks, I have not been eating or sleeping.

my current prescription is
R +4.00 -3.00 180 prism 0.75dn
L +3.25 -3.75 175 prism 0.75up

is it possible I could have had it in my adolescent years and now it has stabilised? the optician said its impossible to tell and he had cone across people who it can just stay like this for 10 years with out moving. I don't really tend to get halos (sometimes a little glare} or sensitive to bright lights, however my vision does decrease with night time vision, and since wearing glasses I don't really get miagrains but do get mild eye strain if my eyes have been working all day. Also I am not able to read a number plate from 20M which is what lead me to getting glasses, this has improved from when i first start wearing glasses 3 years ago, with my current prescription and eyes being more adjusted to glasses I can read a plate from around 17M

Is it possible I simply have a higher astigmatism and therefor it is showing a little red on the chart & he is confusing it for KC? Or any other condition which is showing as KC. Or is it once some red shows in the chart you definitely have it. I have read online it us usually active for 5 years but after reading this forum it seems to be active for many more years.

Thank you

Hi Tiger and welcome!
Please don't panic! I'm not a medic, just someone with KC, but from everything you say, it sounds as though you have a mild form of keratoconus and given that you say things haven't changed much in the last 2 and a half years, it's very likely that it will stay stable. KC varies a lot from one person to another, and although it's often described as a 'progressive' condition, as you were told, in mild cases it can stay the same for years and have little effect on the vision. Of course, you don't tend to come across those cases on the web, because they don't interest the specialists and the people themselves find they can just carry on as normal even though they've had a diagnosis of an unusual condition.
It's always scary to be told you have an eye condition that most people have never heard of, but I hope this reassures you. The fact that contact lenses gave you no improvement over your glasses is another indication that the KC is mild. And if things did start to change, you've seen from other posts that there is a treatment to stop progression. But as things are stable, there's no need to intervene.
If you do want certainty about the diagnosis, you could always ask your GP to refer you to a hospital eye clinic. But unless you start seeing changes in your vision, it sounds as though you really don't need to worry. I hope that helps, but don't hesitate come back with any more questions.

Thank you for your reply, you probably have come across people like me, but let me say, your support is a god send, and anyone else who can help, please respond. As I mentioned before I never wore glasses untill I was 22 and I am 25 now, and going to be 26 in May. My first few prescriptions in the first year of ever wearing glasses 2017 were pretty off, but this past almost 2 years prescriptions have very much been similar with the Axis moving a few degrees in each eye back and fourth depending on who I get my test done by and cylinder / sph moving 0.25 up and down, my last 2 test were taken 6 months apart by 2 different opticians with the latest just 2 weeks ago and the only change was the right eye cylinder dropped by 0.25, my current glasses are giving me the best vision I have had. In your opinion people with ongoing KC, what kind of changes in their prescription will they see, and does their eyesight become worse? I have read about CXL and pray to god no one has to go through any operations. I have read b12 is what is put in to your eyes, I am now going to start taking a high dosage B12 vitamin tabs, have you ever come across anyone else who has tried this, also if i can find eyedrops with b12 in them I will also purchase them. My eyes do feel tired at times and dry, do you know if it is advisable to take them? or could it make KC worse, I have now stopped rubbing my eyes. please reply back in as much detail as possible, I am panicking so much & can not eat

hiya tiger,

personally id not take a high dose of any vitamin without medical approval as you can potentially do more harm than good so please seek professional approval for this.

KC is a awful disease but one that sounds rather mild in your case so please as Anne has said above try not to panic about it.yes it is scary to be told their is something wrong with you n then to read it is degenerative but not everyone ends up with it as severe as each other.

Lea x

thank you for your reply lea, I will try to not worry. I suffer from panic attacks and anxiety so this is not the easiest to process this. Hope you are well & again thanks for your reply

You're not alone in suffering anxiety, its not something which tends to get talked about as much as we're expected to be stoic and cope and everyone is different (regardless of severity).
Most people outside of eye forums are terrified of eye conditions, some people are terrified if eye drops.
It's good to get advice so that you can see where you are on the disease continuum and thankfully yes, yours is mild.
But do feel free to check out stuff no matter what, to help you with your anxiety. You're not alone.