UK Keratoconus Self-Help and Support Association

Hi, new to this so if im putting this post in wrong place apologies. I don't have KC I have a similar condition though called keratoglobus. I have read some of the posts in the forum and realised how similar both conditions are. I don't know of any forums specifically for my eye condition, not really much information on it so I thought I might join this one. I can't wear contacts as my condition doesn't allow it (contacts will not sit in my eyes due to cornea shape) so I wear glasses. I have my first appt at the low vision clinic in June. I'm not sure what to expect but the consultant wants me to give it a try. Anyway just thought I would say HI.

Hello Pam and welcome to the forum.

You are not the only person here who has keratoglobulus, which is in any event very similar to keratoconus.

Every good wish

Andrew

Pam

Keratoglobus is a form of keratoconus where the whole cornea is involved rather than just a small area. It also comes under the umbrella term of "Irregular Cornea" which includes keratoconus, pellucid marginal degeneration and post refractive surgery.

Can I ask, has anyone tried to fit you with scleral lenses? These lenses cover the cornea AND the white of the eye, so are not like the small rigid lenses that it appears you have already tried.

Lynn

Hi, I don't know what scleral lens are to be honest. No one has ever mentioned them to me as an option. I have always been told contacts are not an option for me. Consultant once tried a bandage contact lens after an op when my cornea perforated but it would not stay in at all. I wear glasses and have done since my teen years. The vision in my right eye can longer be corrected using glasses. The vision in my left eye is not as bad as that yet. Really struggle with lights though and vision is not great in the dark. I am glad I found this forum it is good to be able to learn about this condition and discuss it.

I had a scleral lens at one time, and it remains my all time favourite lens.

Unlike a rgp corneal, the scleral lens rests on the white part of your eye (hence the name scleral), and vaults over the cornea. I'd certainly recommend that you ask about sclerals at your next visit to the optometrist.

All the best

Andrew

Hi Pam,

As Andrew says, scleral lenses vault over the cornea and are a specialist lens that is often used when nothing else works. Normal bandage lenses or rigid lenses would have difficulty staying on your cornea but you may be able to see better with a scleral. However, it is a very specialised area of fitting, so is not easily available in many hospital eye departments but you can be referred on to other hospitals, such as Moorfields, to be assessed for fitting.

Most people with any form of keratoconus have eyes that cannot be corrected by glasses. That is really part of the definition of the condition. If you are really struggling, it may well help you to ask to be referred to a hospital that has a wider range of contact lens options on offer.

Lynn

Thanks Andrew and Lynn, I have the eye clinic again at the start of June. I will ask, see what they say, though it is not actually the Consultant I am meeting with this time but someone about visual aids. Thank-you for the information.

Hi Pam
I don't know whereabouts in Scotland you are, but I'm pretty sure that Gartnavel Hospital in Glasgow offer scleral lenses (I'm sure Andrew will be able to tell you if that's where he got his). So if that's not too far away for you, you could ask to be referred there. Our last newsletter included a summary of a talk we had at one of our meetings about specialist lenses including quite a bit on scleral lenses. If you'd like a copy of that, do e-mail me on
anne@keratoconus-group.org.uk
All the best
Anne

Hi Anne, thanks I will email you for a copy of the newsletter. I live in Aberdeen and attend the eye clinic here (ARI). I never heard of these lenses before until Andrew and Lynn mentioned them, I will ask about them in June when I have my next appt. I don't hold out much hope of being referred to another hospital, though but it never hurts to ask. Thanks.