UK Keratoconus Self-Help and Support Association

Hello,
I’m new to this forum and i’ve been having real difficulties with my vision.

My name is Sam and I am a 25 year old female who has Keratoconus in both eyes, my left eye is severely effected.

I was diagnosed wih Keratoconus in April 2017 and have been monitored for any changes in my condition.

My vision in my left eye is bad with 20/100 (6/36), and my right eye is good with 20/20 (6/6) vision with both unaided.

I have tried contact lenses but I found it far too painful to wear them.

However the ophthalmologist has said he will not cooperate with me unless I buy the contact lenses and have crosslinking done as well to halt the disease in my left eye.

He has said that further down the line I will need a transplant but he keeps saying that contacts will improve my vision, even though they are too painful to wear.

I noticed that on my notes from the ophthalmologist that I have been refused intact surgery as my left eye has advanced Keratoconus and corneal scarring. But they still only offer contact lenses at this stage???

I heard from other sufferers that they were able to get corneal transplant surgery at this stage but my ophthalmologist is not having any of it.

I had to give up on my education as I have been having more difficulty reading the most simplest things, my right eye gets tired easily after compensating for my left eye.

What should I do? Has this happened to anyone else?

Also i’m trying to get treatment on the NHS as I live in the UK. Normal waiting times for me to see my ophthalmologist is around 6-8 months.

Thanks

Hello Sam,

Welcome to the forum.

SammySam wrote:I have tried contact lenses but I found it far too painful to wear them.

Which contact lenses have you tried? There are lots of different contact lenses for keratoconus and different lenses suit different people and it can take several appointments to get the best fit/comfort/vision. There are even some specialist soft lenses for keratoconus so it would be worth trying these.

Don't forget that you can't undo a transplant and many people find that they still need contact lenses to optimise their vision.

So it's worth trying to find a contact lens that suits you. Even if you can't find one that fully corrects your left eye it would help your overall vision.

Do have a look at the videos from the last conference which can be found here:

https://www.keratoconus-group.org.uk/in ... -videos-2/

In particular the last video where Ken Pullum talks about the different types of contact lenses you might find useful.

Lia

Hello sam.

just wanted to share with you a bit of my experience. i am roughly in the same stage as you, my left eye is really bad, with scaring and all, while the right is still coping a bit, but i had cross linking done ab 7 years ago. back then my right eye was the bad one. so because i coudlnt afford cross linking on my left one to....i lost it in jsut 7 years. if you get the chance of cross linking on the good one just take it. as for contacts, i have been trying contacts for some time now, you need to have tons of patience with them , but so does you optometrist. on my left eye the oftalmologist said that if the vision cannot be corected with any kind of lens than i have nothing to loose if i try a tranplant, and ofc no correction was possible. now they are insisting on my good eye and i am waiting to see how the tranplant will go. they said off the records i should have the surgery done in ab a year or so. so do be patient with the optometrist as he should recomend the transplant at one point. or i think you can ask to chance the person if you are not pleased with the one you are seeing. i use to see the same person all the time, and once there was another person so i just asked after that i be appointed only with the person that handles my case as she already knows my history. hope you all the best, and dont forget to be patient and strong!!!