UK Keratoconus Self-Help and Support Association

I'm a newbie so really sorry if this has been asked before (although I did do a search first).

I have had keratoconus for 8 years now and have been coping fairly well with glasses with the odd day of not being able to tell the difference between the letters e and c, y and v, h and n etc... but I had an eye test yesterday and my right eye has deteriated quite badly in the past year. Optician has recommended SoClear lenses but I'm really really squeamish about contact lenses and have quite sensitive eyes. I googled them and can't really find much info beyond the corporate website (where of course, everything is great!).

Has anyone else used these lenses or any other scleral lenses? Are they comfortable? Easy to put in and take out? I have another appointment on 9th September to discuss contacts in more detail and would like to go prepared.

Any help would be fab (and a little reassurance that I'm panicking for no reason )

Thanks!!

Lisa

Hello Lisa

Welcome to the forum! I am afraid that I don't have any direct experience of the lens type you mention, but there is sure to be someone along in a moment who can answer your question and help put your mind at rest!

There was a time when most opticians would dispense only RGP lenses for keratoconus; but with the improvement in lens materials and the expansion of lens types there is now a far greater range of lenses available for people with our eye condition. This is a good thing, since no two of us are alike and a lens that works for one person may not work for another.

All the best.

Andrew

Hi Lisa and welcome to the forum!
It's good to hear from someone who has managed for 8 years with glasses. There's probably lots more people like that out there, but they don't usually post on this forum!
And lots of people find the idea of contact lenses daunting. Although I've never worn sclerals or Soclears, I did act as a guinea pig for an optician demonstrating Soclears recently. And once they were in my eyes, I did find them very comfortable. Soclears are fairly new, but there are a couple of people who post here who have them, so they will be able to tell you more. As with any lens, it does take a little time to get used to putting them in and taking them out, and you'll need to build up the wear time gradually over a couple of weeks. But they should make a big difference to your vision, which is always a good motivator! And we have a lot of members wearing other types of scleral lens and quite a few of them say sclerals are the most comfortable lenses they've ever tried. So good luck and do let us know how you get on.
Anne

Thank you for the replies

I had been working myself into a bit of a frenzy at the thought of the size of scleral lenses last night so thought I'd better find somewhere to get a bit of advice and came across your site. It's putting me at ease already so thank you for that!

Kind of ironic that someone as eyeball squeamish as me had ended up with an eye condition! Hopefully, the lenses will do as the optician said they could do and slow down the deterioration.

Until recently i have also been very squeamish about going near my eyes and even the opticians/nurses at eye clinic used to have problems when they got to close to do the various eye exams/scans etc. standard joke at my hospital with the nurses as to how many times they will have to do the topography before they get me with my eyes open

I started trialling contact lenses last summer (second time around), after managing for a number of years with glasses. Am back out of CL at the moment due to extreme dry eye. What someone suggested to me to do (not sure if it wasnt my CL fitter actually) was to start trying to touch the whites of my eyes keeping the eyes open prior to being fitted with contact lenses to get my body/brain used to the sensation of going near my eyes with my fingers. it did help in being able to stop myself from shutting my eyes when the CL fitter was putting lenses in and taking them out.

I have found that with perseverance and time i can get CL in and out quite quickly now, but at the start it was a 10-15min job per eye at least both putting them in and taking them out. and whenever i am out of CL for any length of time it reverts back to having to get used to something near/in my eye.

I even struggled with putting mascara and eyeliner prior to wearing CL as i was that squeamish about going to close to my eye.

Lisa

Welocme to the forum.

There are anumber of new lenses and onther type that might be worth considering is the silicone hydrogel soft lenses. I was told they would not work for me due to my KC and grafts but I am now getting better vision than my RGP's gave and they are extremely comfortable.

Unfortunalty no one can say for definit what lens will suit you best, the proof as they say is in the eating.

Hallo Lisa and welcome!
I've never tried SlClears, but have been wearing sclerals ever since I was 14 (I'm now 48(
I too was very squeakish about my eyes, and when I first got the lenses, they had to teach my mum to put them in and take them out as I just couldn't bring myself to do it.
That lasted till the day my mum was inthe bath and Dr Who starting in 5 minutes. yup, I was like that at 14.
I also had the legendary pink fit at seeing how big they are - I think that goes for everone who's ever seen one.
Good luck with thek with the SOclears - hope the do the trik for you. Some people will swear by one sort of lenses, and other swear at them - it is very individual,. Hope you get something sorted.
Rosemary

Thank you for all the replies. It's nice to know I'm not alone in the squeamishness stakes! Still a bit nervous but I guess that will last until the day I get them fitted!

Hi Lisa,

I've recently been fitted with the SoClear lenses that you mention and so far I am very positive about them! Although they are a little larger than other types of RGP lens, I have experienced significantly higher levels of comfort! It has taken a little bit of time to get the correct lens fit and get used to inserting them but I feel I've nearly cracked it and once they are in, I'm hardly aware of them at all! The contact lens solution I've been using (Opti-free Replenish) also seems to be working well. My optometrist has been very supportive also and this has helped! My advice would be to take your time getting used to the lenses and focus on the comfort / vision benefits they may be able to bring!

All the best,

Stephen