Share Your Story, Find Your Community
Your experience with Keratoconus is unique, and it’s also a powerful tool for helping others. By sharing your story, you’re not only finding a voice but also providing invaluable support and insight to our community.
We invite you to share your journey—the challenges, the victories, and the daily realities of living with KC. Your story can offer encouragement and practical advice to others who may be facing similar situations.
To share, simply email your story to: chair@keratoconus-group.org.uk. You can choose to remain anonymous if you prefer. We also encourage you to read and comment on the stories below to connect with others.
Keratoconus in my teens/twenties
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…
Dale’s Story
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.…
Matti’s Story
“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…
David’s CXL Story
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…
I am a parent of a Keratoconus sufferer
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…
The Man with the Funny Shaped Eyes
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…
Dougie’s Story
I’m 27 and live in edinburgh and was originally told I had KC when I was 12 years old I can remember it well as I was surprised being told…
Richard’s Story
I was first diagnosed with KC around 11 years ago, but I really didn’t think that much about it at the time, and it hardly bothered me for the first…
Donor’s Vision Helps Victim
It started when he was a teenager, with a gradual deterioration of his sight – first in his right eye and then in his left. But Jonathan Pickles was already…
One member’s experience of a corneal graft
My brief history After having KC for 10 years and exploring various possibilities, I went on the waiting list for a graft in January 2003. Following an episode of hydrops…
Rugby and Keratoconus: A personal account
I write this passage to pass on my own experience of having and living with keratoconus. Although the condition has been for me frustrating and limiting in certain aspects, my…
David’s Story
My story begins in 1972 when I was 25. I was working in a bank in London and was starting to notice that the figures in the ledgers, appeared to…