UK Keratoconus Self-Help and Support Association

Hi all,

Just found the website and forum and it's brilliant!!!

I have a problem though - I'm a 31 year old black African female, was diagnosed with KC 8 years ago and started wearing hard lenses almost immediately. My eyesight has gotten progressively worse and I've been to the hospital 4 times this year to get them re-fitted as they have all either been too tight, too loose or just not right!!

At my last visit to St. Thomas's in London, I was told about the Corneal Collagen Cross-linking with Riboflavin (C3-R) treatment and asked if I wanted to consider it. However it is still being trialled and am not sure what to do - but I know I need to do something as the contacts have just become really inconvenient. I wear my contacts all day from 6 to almost midnight as I work long hours in construction, my eyes are almost always red and sore.

As if that was not bad enough, I have been posted to Singapore with work for 2 years and now need to decide if I want to undergo the treatment or continue as I am.
I would really appreciate if anyone can help or give advice on this issue.
Has anyone out there had the treatment, does it work?
If I decide not to have it, what level of care can I expect for the condition abroad if any?

Looking forward to replies.

T Sanni

Hi Tosanni and welcome.

Even though I have KC I am far from an expert and no doubt I will be corrected if I say anything which is inaccurate.

I agree C3R is still in it's infancy and my undrestanding is that it may halt the progression of KC but is unlikely to improve the condition.

I have recently had problems with lens toleration but have enjoyed good vision with lenses. I am currently piggybacking, which means I wear soft lenses under the hard ones and the level of comfort has increased considerably. Of course this may not necessarily work for you but may be worth investigating.

I am sure you will hear from people who have had C3R fairly shortly.

All the best.

Tossani

C3R is undergoing trials now in the UK and with any luck will be investigated by NICE and selected as a treatment option on the NHS.

Thing with C3R is that in many instances it has halted and in some regressed the condition. Health proffessionals such as the one at the confrence the group had this year stressed it was experimental and we have no idea of how long the treatment last and are top ups needed. To date the selection criterea for this treatment ahve been strict with different research groups appearing to have different criterea but not publishing these in the papers they later write on the subject.

If C3R halts your condition, then you still have the lens fit issue, even if it regressed the condition, where this has happend it has been slight so still potentially lens fit issues.

You say you are using RGP's and been in to hospital 4 times, was this because the fit was not correct or vision deteriorating or a combination of both?

There are many variations on the RGP contact lens, soft perms wher it is an RGP lens with a soft skirt, piggy back as Michael describes or scleral lenses.

Take a look at Treatment Options.

The thing with any surgical intervention for KC is only one eye at a time is done and the results take time to come, for some it is a matter of months, others it is 18 months.

Once thing that concerns me about your opening post is the time you say you have to wear lenses. My understanding is employers have an obligation to make reasonable adjustments to accomodate our condition if it is having a detremental affect on us. Having red raw eyes at the end of the day will certanly go a long way to making any lens feel uncomfortable. The construction sites I have been on are very dusty and rarely provides good eye protection to prevent dust getting in the eyes. Under HSE guidelines, conatruction sites have a legal obligation to ensure the well being of all on and around the the site.

What discussions have you had with occupational health about this?

Sorry to have asked more questions, but hopefully some of what I have put will be of use.

Gareth

Hi Tosanni,
I am working in Singapore. Singapore Hospitals are not yet started C3R treatment for KC. But you can find very good Contact lens Fitters Here.

Kishore