UK Keratoconus Self-Help and Support Association

Hi, I have just joined and this is my first time posting.

I have Keratoconus and I also suffer from Ommetophobia (fear of eyes/things touching eyes etc).

My brief KC history - diagnosed at 19 (30 now), immediately offered RGPs, immediately declined as I could still see fine with specs. Left eye has progressed to the point at which there is no useful vision left in the eye. I had a hydrops in the left eye about five years ago and now have a big beautiful scar right down the middle of my cornea! The hydrops appeared over night, not a drop of pain, and then disappeared overnight again six weeks later. Right eye has always just had mild KC up until around 18 months ago where it started to progress faster. Had CXL epi-off in right eye 8 months ago (under general anaesthetic, after much persuasion). The op was successful but my vision is now poorer than pre op. Still wear specs ( right eye does all the work while left side of specs has a balancing lens instead of a prescription).

A couple of months ago my Dr once again Asked me to try RGPs, only this time, I didn't have much of a choice left. I've come to the end of the road with specs, which we both thought wouldn't happen. My vision is quite poor and I am at the verge of giving up driving and seriously struggling at work (office and computer based, full time). It's time to bite the bullet and get the RGPs!

Thing is, I'm an Ommetophobe. Like, a really bad one. Like most phobias, when it comes to the act or even the though of putting lenses in, having anything touching my eye, or coming near my eye, or even just going to the damn optician for a check up, I freak out. Sweats, dizziness, erratic breathing, panic, fainting, the whole shebang. Can't bear it.

Today I had my first RGP fitting. It went badly. See above.

I go back in one month to try again. (My dr must actually hate me)

Soooo lovely fellow KCers.... What can I do to get over this? I know the RGP could make such a difference to my quality of vision, my quality of life, my independence - I need this. Yet I still freak the F out. Tips/advice/fellow 'phobes experience would be amazing. I know I may be in the minority having such extreme reactions whilst having KC too. Considering hypnotherapy/counselling/Kalms! Any and all responses are much appreciated!

(PS the surgeon who did my CXL has agreed to give me a graft in the left eye if I can manage and tolerate RGPs in the right first. At the moment I am not a viable candidate!)

Hello Mrscribbs,

Welcome to the forum.

I think that for anyone having a lens put in ones eye for the first time can be a strange experience, so I can imagine that with ommetophbia it could be quite an upsetting procedure. As your vision is quite poor with glasses try to think about the vision contact lenses will give you and how it could improve your life. I think that it is possible to have anesthetic drops when an optician is fitting contact lenses - do ask if this is possible.

There are different types of lenses for KC including soft lenses so it may be worth considering which type of lenses might be more acceptable to you as they all have slightly different insertion and removal techniques.

Lia

And it would definitely be worth trying hypnotherapy or counselling to see if you can get over the phobia. You've clearly got lots of motivation which should help. I don't know whether there are therapists who specialise in ommetophobia. Maybe your hospital would have suggestions? You can't be the first person they've come across with this problem. Wishing you the best of luck.

Thank you for your replies. I have an initial consultation with a hypnotherapist this Tuesday so fingers crossed she can work with me!