UK Keratoconus Self-Help and Support Association

Hi there,
I'm 36 and had suspected keratoconus 9 years ago but got discharged eventually, with no further checks. Three months ago, I experienced vision loss and a rapid change in myopia and a massive increase in astigmatism. I was told I was being referred to the hospital with suspected keratoconus. I was given a new lens in my spectacles, despite having had an eye test 6 months earlier.

So three months ago I was given a new lens in spectacles, all was well and now two months later my vision is blurred in the same eye again. I went back to the optician and she said my astigmatism has doubled again and they can no longer fully correct my vision with glasses. She has said she is sure it is keratoconus now as she can see a scissor reflex in my eye. I now need another new lens just two months on, but there is still another 3 month waiting list before i can be seen in the eye hospital. Is it safe for my eye sight to have wait this long? Will I lose most of my vision if it is deteriorating so quickly by then? What can I do?

Hello Bubbles,

Welcome to the forum.

From what you say it does sound as if your keratoconus has developed quite rapidly.

If you were referred to the eye hospital three months ago and still have another three months to go that does sound excessive. The guidelines for NHS waiting times are 18 weeks for non-urgent referrals.

https://www.nhs.uk/using-the-nhs/nhs-se ... n-england/

Cross-linking is a procedure that can stop keratoconus progressing but is only used when keratoconus is progressing and the cornea is not too thin. As your keratoconus does seem to be progressing quite quickly it may be worth asking your GP or optician to see if an earlier referral is possible.

Although it is no longer possible to correct your eyesight with glasses it should be possible to do so with contact lenses. There are lots of different designs available for keratoconus these days so, hopefully, when you have your referral to the hospital they should be able to find one to suit you.

Do let us know how you get on.

Lia

Thanks so much for getting back to me Lia, I really appreciate it. I'm based in Wales so do you know if the waiting list guidelines are different? I ask this as i have just been referred urgently for a different problem and I see in England I would be seen within 2 weeks, here I have been told I will have to wait up to 6 months!

Details of waiting times in Wales are described here:

http://www.nhsdirect.wales.nhs.uk/encyc ... tingtimes/

Lia

It's unusual to get such rapid progression after your 30s, but I guess it does happen.

As for waiting times... I'm not a ballsy person but I wasn't prepared to muck about when it came to my vision! I stormed into the eye unit and stated politely but with force that I wanted to speak to a manager. I did, and arranged for an appointment the following week. Not saying it'll work for everyone but worth a try!