UK Keratoconus Self-Help and Support Association

hey, im 22 years old, diagnosed with keratoconus when i was 20 at university. received RGP lenses through Sutton Eye Hospital (still a patient there but not really convinced they know what they are doing half the time!). They only have a contact lens unit open every tuesday, and i find it hard to get any useful advice inbetween 3 to 4 months appointments.

have keratoconus in both eyes, particularly badly in my right eye, which just about allows a lens to fit, although i have been told it 'hangs on by a wing and a prayer' by my doctor.

ive attached a couple of pics as i recently started working in central london, primarily on a pc, and i often end up having to go with just one lens in throughout the day due to discomfort. by the end of the day you can see a light brown circle as to where the lenses have been in. whenever my eye is particularly painful i always have a prominent mark, im guessing this is wear the lens has been stuck to the eye?

i was just wondering if this is common? i wear my lenses from 7am till 11pm nearly every day, i don't have much choice as i have a long journey to work and long work hours, although i often commute in without them in to rest my eyes....things sometimes get a little interesting! my next appointment isn't until the 11 august, glad i found this forum however as it gets very frustrating trying to get advice inbetween appointments on the nhs!!

thanks

james

Hallo Hames, and welcome to the group.
Brown rings does not sound right.
The wearing times you cite are pretty long - I'm not entirely surprised you find you're having to take one out or commute lens-less.
If you are getting rings from the pressure of the lenses and much pain, I'd think you need to get someone who knows what they are doing to check this out. It may e a different fitting of lens, or a different type of lens (there are more of these now than there used to be, and more keep coming along) may be a better option.
If you are not happy at Sutton, and particularly if you're now working in Central London, maybe you could get your GP to refer you to Moorfields?
Rosemary

Hello James, and welcome to the forum

Can you grab a couple of hours in the middle of the day when you take your lenses out?

It does sound like you are wearing your RGP's for rather a long time each day.

Why not go back to your contact lens clinic and ask about optimal wear times?

Andrew

I understand what it is like to NEED your lenses for 16-18 hours a day. I have always been told by my contact lens practitioner that the lenses shouldbe worn for 8 hours only- but that is just not practical. I didn't listen to them- but i did end up damaging my cornea surface (although it is debatable whether it would have happened anyway)
I found that piggy-back lenses helped me- but there are many other options which others found more suitable for comfort. Keep trying different options- and you will also get used to working with 'one-eye'... I do it fairly regularly now, and my brain no longer gets too stressed out by the confusion.
good luck

thankyou for the advice, i have an appointment on monday where i hope to clear some of this up, i know what you mean about working one eyes though!! i really would like to be referred to moorfields, so i think i will raise the question as i dont feel my current clinic provides the support and authority on the topic of keracatonus. is there not a waiting list etc for moorfields however?

I don't think there is a waiting list to be referred to Moorfields, per se.
There may be a it of a wait to get the first appointment, though.
They do now claim to have targets for getting people their first appointment, now. SO hopefully, it should be 3-4 months maximum.
Rosemary

Try comfort eye drops and make sure your employer is aware of the issues.

They do have a certain obligation to make reasonable adjustments to allow for a work/life balance.

I am disgussing this further at the moment with mine so I can see in the evenings and weekends rather than just have vision only when I am at work.