Share your Story. It is interesting to learn how others cope by sharing experiences. Simply email your story to: chair@keratoconus-group.org.uk. You can remain anonymous if you wish. You can also comment on the stories below and add useful thoughts and information.
How has it been living with keratoconus? The world is blurry. Very blurry. Words, faces, everything just seems out of focus and I walk around seeing shadows, no real clarity, just mixed colours and shapes. Sometimes I can see that there is someone there, but I can’t properly recognise who it is until they are…
On 4th October, Johnny Sloss will be lacing up his running shoes and taking on the AJ Bell Great Scottish Run, all while raising funds for Keratoconus Group. We’re incredibly grateful that Johnny has chosen to support our charity and help raise awareness of keratoconus, a condition that has been part of his life since…
I am now 80 and was diagnosed with KC in 1978. Used hard contact lenses from 1965 (not gas permeable in those days) until right eye required full depth graft in 1987. Left eye had KC as well but nowhere near as bad. RGPs fitted for both eyes & successful for 19 years (wore glasses…
UPDATE 1st April 2026: After a long and often frustrating journey, I’m incredibly relieved and grateful to say that the NHS contact lens service has now been reinstated. As many of you know, this isn’t just a service, it’s a lifeline for people living with keratoconus and other complex eye conditions. I’ve seen first-hand how…
Around the age of 15/16 I was diagnosed with keratoconus. I was a glasses wearer, but I was really struggling to see anything in much detail. Trying to see the board at school was tough, even close up reading became a challenge. I spent most of my GCSE years squinting, much to my embarrassment. None…
Without and With Lenses Hi I’m Dale, I have Down syndrome, I’m autistic, I can be extremely challenging because the world doesn’t suit me very well… and I have KC. I will be 40 this year. My abilities are at about a two-year level. I love planes trains rugby and You’ve Been Framed. When I…
“I have had suspicions that you might have Keratoconus in your left eye” In the early 1990s I went to see my optometrist back home in Finland for my annual check up. I had noticed that sometimes the correction with just glasses left my eyesight especially on the left side lacking in clarity and focus.…
In December 2020 I underwent cross linking at Birmingham Midland Eye Centre. The procedure was on both of my eyes and I had the operation under general anaesthetic. I am writing this 6 weeks after the operation, so it is all fairly fresh in my memory. Me and Signing Up To Cross Linking I was…
So I am a parent of a Keratoconus sufferer. Since she was diagnosed at 16 I have struggled to understand what my daughter goes through on a daily basis.I have wanted to post Brooke‘s experiences so often but it never felt right.Now I want to tell her story and hopefully it can resonate with other…
A while ago I wrote this, just really to get it off my mind and keep it down to look back on in the future, but if my experiences can help just one other person feel a bit more at ease about the whole thing then even better. KC really disrupted my travel plans aha,…