UK Keratoconus Self-Help and Support Association

Hello.
I’m Bob, this is my first post. I’ve lurked around here from time to time since my 15 year old son, Josh, was diagnosed as having early KC, in his left eye, about 10 months ago.
He has been under an NHS specialist since February. The hospital are taking a softly, softly approach to Josh’s treatment focusing on reducing eye irritation by use of steroid & antihistamine eye drops. The doctor has mentioned the possibility of using intacs in the future but suggests his vision has not deteriorated enough yet.
From the information I’ve gleaned from here and other parts of the web (dangerous, I know) I thought the first stage of treatment would have been a hard contact lens but was told these were “out of fashion”. Your comments welcome.
I’ve been encouraged from what I have read about CXL on the web. I’m very aware that some of the information is possibly sales orientated & therefore biased but if it can produce the results claimed it seems obvious to carry out the procedure sooner rather than later. Surely it is better to preserve the condition of the cornea in its best condition? I would really appreciate people’s feedback, experience or opinion of CXL or any other relevant procedures.
It’s my intention to be very proactive in getting the very best treatment for Josh and I hope that being an active member of this forum can help achieve that. I also intend to keep the forum informed with what is going on and hopefully that information can be of use to others.

Bob

Hello Bob and welcome!
Does Josh get hay fever and /or other allergies? If he gets a lot of irritation in the eye, it would make sense to tackle that first before thinking about contact lenses. And while it's true there is now a wide range of contact lenses that can be used for KC eyes, I'm a bit surprised that you were told hard contact lenses were 'out of fashion'. There must be thousands of us wearing them, and they're certainly the first option that most hospitals try. Though if Josh's KC is mild at the moment, glasses may well give him enough correction, or his 'good' eye may be able to do all the work so that he's seeing reasonably well.
As far as CXL is concerned, the NICE guidelines say this may be appropriate where KC is progressing. So again, the hospital will want to monitor your son's KC to see whether it is changing over time before thinking about that as an option. But I'm sure you'll get feedback from other people here who have gone down that route.
If you're not already on our postal mailing list, do e-mail anne@keratoconus-group.org.uk and I can send you the DVD of our 2007 conference, which included talks on CXL, Intacs and the various contact lens options from health professionals.
As I'm sure you've gathered from your researches, KC is very variable in how it progresses and how much it affects the vision in any individual. But it's always good to know what options are available if they are needed. Do let us know how Josh is doing.
All the best
Anne

Anne Klepacz wrote:Hello Bob and welcome!
Does Josh get hay fever and /or other allergies? If he gets a lot of irritation in the eye, it would make sense to tackle that first before thinking about contact lenses. And while it's true there is now a wide range of contact lenses that can be used for KC eyes, I'm a bit surprised that you were told hard contact lenses were 'out of fashion'. There must be thousands of us wearing them, and they're certainly the first option that most hospitals try. Though if Josh's KC is mild at the moment, glasses may well give him enough correction, or his 'good' eye may be able to do all the work so that he's seeing reasonably well.
As far as CXL is concerned, the NICE guidelines say this may be appropriate where KC is progressing. So again, the hospital will want to monitor your son's KC to see whether it is changing over time before thinking about that as an option. But I'm sure you'll get feedback from other people here who have gone down that route.
If you're not already on our postal mailing list, do e-mail anne@keratoconus-group.org.uk and I can send you the DVD of our 2007 conference, which included talks on CXL, Intacs and the various contact lens options from health professionals.
As I'm sure you've gathered from your researches, KC is very variable in how it progresses and how much it affects the vision in any individual. But it's always good to know what options are available if they are needed. Do let us know how Josh is doing.
All the best
Anne

Hi Anne.
Thanks for response.
Yes Josh suffers from itchy eyes through hayfever. As you say it makes perfect sense to try and reduce the irritation & i'm happy with that course of action.
I'll ask for clarification of the comment regarding the contacts/intacs at the next appointment. There will be a raft of other questions too based on the info & advice offered elsewhere on the forum. Excellent.
I willdrop youaline regardingthe DVD.
Thanks.
Bob.

Hi Bob

Many optometrists I have spoken with from the confrences I have been invuited to in the UK and Europe are rethinking the use of rigid contact lenses as the first line of treatment. This is partly because of concenrns that rigid lenses can have with some people regarding corneal scarring after many years of use which can mean that CXL would be ruled out so they take a more cauteous approach.

As Ann says there are many types of contact lenses available to us compared to the RGP lenses and everyone is different so it is often patien specific as to what lens is considered best to start with for that particular individual. I suffer hayfever too, but it isn't affecting my eyes at the moment, it did a bit last year when I had only been on the soft lenses for my KC for about 3 months before the hay fever season started. Now that I have been using the soft lenses for 18 months I have absolutly no eye irritation due to hayfever or the the affects RGP lenses had which seemed to exacerbate the problem.

I also suffer from dry eyes and with RGP lenses I would have to use eye drops every couple of hours, but since being on the soft lenses I only need eye drops first thing in the morning and last thing at night when I take my lenses out.

The lenses I am on are the Kerasoft IC lenses which are a high water content silicone hydrogel (three monthly disposable) and the level of vision I get is far superior than the RGP corneal lenses I had and rather than upto 8 hours lens wear 5 days per week, now I wear the Kerasoft IC lenses all my waking hours, 7 days per week.

Bob,

RGP (hard) lenses have been used for many years and at one time were thought to "cure" KC by "pushing back the cone". This has now been shown not to be true, however, many professionals still believe this and I come across this opinion whenever (and where ever)I lecture on keratoconus. It may be this aspect they meant by the term "Old fashioned". Alternatively, it could simply mean that at one time the only real option for KC management was rigid lenses or grafting. Nowadays, there are many more lens options and also lots more surgical options than there were even a few years ago. So, its an exciting time for KC.

Certainly, rigid lenses are not necessarily the first port of call for someone with early/mild KC as they may well manage with spectacles or normal soft lenses.

Lynn

Gareth, Lynn.
Great information, thanks. My knowledge growing rapidly thanks to this forum & i-cf.org which I understand you are both involved with. It's so encouraging to know that advances are being made in KC research and that you are helping to bring it to light. Good work.

Bob.

Hi
I am also new here, this is my first post.

I have just been diagnosed yesterday with Kera. I am a little frightened i didn't ask any questions when with the consultant, I think I was in shock. I am a young mother of 3 kids. I have moderate kera in right eye what i would like to know is how fast can this get worse. I am using glasses at present.

Sorry for being so vague as i have never posted on any site every before.

Girls girl

Welcome to the forum. the first and best advice is:

Don't Panic!

Actually, your moderate KC may stabilize and never advance. It may, on the other hand, advance quickly or slowly; the problem is that there seems to be no way of telling which prognosis is most likely. The conventional wisdom is that the later in life the condition is first identified, the slower its likely progression.

If you can manage with glasses, then you have the luxury of time and can consider all your options.

Every good wish, and congratulations on your first ever post to a website!

Andrew