UK Keratoconus Self-Help and Support Association

I am 32 years old and was diagnosed with Keratoconus last year. I have never suffered from any other health conditions apart from Athlete's Foot and Dermatitis on my hands. So far I have not required any treatment for my Keratoconus. My right eye is affected so slightly that it is just noticable (I can get down to almost the bottom line of an eye-test chart with it), but my left eye is worse (I can get about half-way down with it). Since being dianosed last year, I have noticed some deterioration, particulartly in the left eye. I must have had the condition for a few years prior to being diagnosed - since 2003 or even earlier. I was aware of 'ghosting', but obviously back then my condition wasn't clinically apparent. Understandably, I have quite a few questions I would like to ask people who have had the condion for much longer than I have.

1. Can anybody shed any light on roughly what percentage of sufferers require a corneal transplant? I know it is said to be about 10 to 20%, but would be interested to get people's opinions on this.

2. The fact that I have been diagnosed at a relativlely late age makes me a little bit hopeful that I may not need a corneal transplant. Does anyone have any thoughts on this? And would it be correct to think that if you reach your 40s and the condition hasn't got too mush worse, you should be 'out of the woods' as far as needing a transplant is concerned?

3. Corneal Collagen Cross-Linking sounds like a good option for a new sufferer to consider - it could nip it in the bud, perhaps. Is it risky? Also, I realize that the conidtion cannot be too far advanced for the treatment to work. I'd like to hear from anyone who hads had it done - how much of an ordeal is the procedure? The only surgery I've ever had is at the dentist - and since I was 13 years old, this has only been fillings at most.

4. Do many sufferers end up with a level of vision that makes day-to-day living difficult?

These seem to be the main questions I have at the moment and I'd very much appreciate answers to them.

Alastair MacDonald.

Alastair. Welcome to the forum. I am sorry you were left so long in the waiting room; I am on vacation and found you languishing there when I logged on from my iPhone.

I have moved your post to 'General Discussion Forum' where it will attract more attention. I am confident that there will be someone along in a while who can answer your questions.

Andrew

Hello Alistair,
I'll have a go at answering some of your questions.
1) The figures you quote for the % of people with KC who will eventually need a corneal transplant are the ones various consultants who have spoken at KC Group meetings and conferences have given us. Though at last year's conference a couple of speakers were suggesting that this figure might now be coming down due to recent improvements in the range of different contact lenses available and new options such as crosslinking and Intacs.
2) Experts do say that the later KC develops, the less likely it is to progress to a graft. And, perhaps more importantly, the longer it stays mild, the less likely it is to progress to a graft. And generally, the cornea tends to become thicker after the age of 40. So the fact that your unaided vision even in the worse eye is still so good is promising. Having said that, I don't think anyone can give you cast iron guarantees!
3) I'll leave others who have had CXL to tell you whether it's an 'ordeal'. And of course, the fact that your KC seems so mild means you don't need to rush into a decision on that.
4) I don't know if anyone has stats on the proportion of people who find daily life is affected by KC. People who post on this forum tend to do so when they're having a problem, so we tend to get a biased idea of the difficulties. Many of those with mild KC probably never post here! And lots of people with KC manage well with contact lenses of some kind (at least until they have to leave the lens out for some reason such as an infection).
If the affected eye is getting worse, contact lenses (or possibly glasses) would probably improve your vision.
Hope that helps.
Anne

Andrew and Anne,

Many thanks for your replies to my post and especially to Anne for your answers to my questions. I feel re-assured by what you wrote and that I shouldn't panic. My main concern is that my left eye may deteriorate quickly and that if I don't act now, I may miss the boat regarding Cross-Linking. What you wrote suggests I probably shouldn't be too concerned about that point. Thank you again.

Best wishes,

Alastair MacDonald.

Anne Klepacz wrote:
3) I'll leave others who have had CXL to tell you whether it's an 'ordeal'. And of course, the fact that your KC seems so mild means you don't need to rush into a decision on that.

Anne

Hi
You are right but don't you think that KC can progress very quickly in couple of weeks/months, so won't it be better to go for prevention i.e. CXL as soon as possible instead of waiting for the disease to grow?

One of the experts speaking at one of our meetings quoted a large study which suggested that KC is less likely to progress quickly when it's mild on first diagnosis, although I agree there's never any guarantees with KC. And the NICE guidelines on CXL say it should only be done where there is evidence of progression. But of course whether and when to have the treatment has to be an individual decision.
Anne

Anne Klepacz wrote:One of the experts speaking at one of our meetings quoted a large study which suggested that KC is less likely to progress quickly when it's mild on first diagnosis, although I agree there's never any guarantees with KC. And the NICE guidelines on CXL say it should only be done where there is evidence of progression. But of course whether and when to have the treatment has to be an individual decision.
Anne

but how exactly it is defined that what is mild ?

I am in same dilemma to have or to not to have CXL, I was diagnosed 3 months back in one eye and since than KC is stable, however some doctors have recommended me to have CXL in BOTH eyes to be on the safe side while others say that I should have it done only in eye which has KC.

vision in my one eye deteriorated very sharply in just a matter of 3-4 months and that's how I was diagnosed, now the question is that what if the healthy eye also deteriorates quickly! than I will be forced to go for hard contacts so isn't it better to preempt the disease and have CXL in both eye ?

Bing,

As we do not know the long term effects of crosslinking, having CXL done on an eye that is not showing signs of KC may possibly cause problems down the line that could have been avoided. I understand exactly where you are coming from but we simply do not know yet the full implications of CXL. It may just be that you may not progress any further than you have at the moment - and this goes for Alistair as well. My advice is that if it is not actively progressing, hold back from treatment. I presume you have sought advice on CXL privately as it is not widely available on the NHS. If so, then it is also possible to get CXL done very quickly in the private sector, so you are not going to lose out if you take a cautious approach.

As far as contact lenses are concerned, you can be prescribed soft lenses and in fact, you can go with soft lenses from disposable through to lathe cut torics to specialised KC soft lenses until you need to go to hard lenses (if at all) so, if that is what is worrying you, don't have CXL just to avoid a certain type of contact lens.

The newest understanding of KC is showing we need a holistic approach, looking at allergy, eye rubbing, dry eye etc as these issues can accelerate KC - for more information look at the interview with Professor Cristina Kenney here http://www.optometrytoday.tv/channel.php?channel=YY63-SPJN-4HL2-LGAO-S1KX&pg=2. This is a very exciting time for management of KC - new ideas are emerging all the time. It may well be we work out ways to deal with mild, slowly progressing KC without surgery.

CXL is a very good choice for aggressively progressing KC as the alternative to NOT doing CXL is dealing with high refractive error not correctable with glasses at the very least. For very mild KC, it really is not clear which is the best way forward. It is only in recent years that mild KC has started to be diagnosed in greater numbers due to better technology and we simply do not know how many people may have had this for years and never known it.

Lynn

Thanks for the link, Lynn. It is a really interesting video, especially about UV light and cross linking.

Thanks Lynn , the link was very helpful
How often do you think that KC patients should get their eyes checked for progression and changes with a scan or a topology map ? like once every month or every three months
as with already weak eye sight you won't be able to self-notice any gradual changes in sight so you will need regular checks