KC Genetics

[dazzabee]

What worries me immensely is that I seem to read a lot about new lenses being developed for KC and hear very little about how KC can be prevented in the first place. Without repeating myself, I go back to my oringial point - money.

For me it would be interesting and essential to find out why, as Lynn states, that not everyone with hayfever or has a relative with KC or has low Magnesium etc, suffers from KC. As highlighted KC is still a rare disease, hence there will be less money plunged into research projects than there would be for say Cancer or Aids, for example. That I understand and I recognise it must be the case with equally rare and indeed even rarer dieseaes than Keratoconus.

What frustrates me, though, and hands up if I am wrong, there seems to be many contact lenses being developed and highlighted for use with Keratoconus. Is this the case because these distributors recognise that Keratoconic patients are so reliant on CL and, as such, they are always looking for the best option both in terms of comfort and vision that KC sufferers are perhaps guinea pigs for their lenses? We all know that soft lenses may be the best for one KC suferer, Sclerals for the next whilst for someone else it may be RGPs. Hence, do these distributors find that when a KC suferer, I am guessing the most dificult to please with a lens due to the complexity of fitting amonst other factors, finds their lens comfortable they know they have a product to market? Is it then that Sclerals can be re-branded as "the ideal lens for sporting wear", "soft lenses as they best comfort option" for ANY CL wearer because if someone with a wonky cornea can find them confortable and can see with them, then anyone can?

I appreciate we live in a world where money is ever important, but it does often make me wonder that CL are seen as a cure for KC what we all no they are not. CL are a resolution for an unknown period and even then, they may or may not work for every patient. Furthermore, some patients are advised on one lens and when that doesn't work get told there is no other option and are put under the knife. Whilst the paitent in another clinic is given another option and when that doesn't work the surgeon is busy once more. It just seems to me that the patient is often not given all the options with clear explanation at diagnosis.

For me, I repeat once more, I believe their is such a lack of focus on research and the rush for lenses and surgery by Otometrists that these so called experts (and I don't mean to be condecending in any way here at all) are, blinded, pardon the pun, by something that could be very obvious if a bit more time and money was spent on the research of the condition so both patient and medic/scientist/optom could do a bit more? Perhaps then a single lens rather than 100s of options could be the answer, surgery (always in my opinion the final, final option) may be avoided, those with KC are given the best possible future and, above all, KC stopped at the core, or before it has even developed, when the high street optician sees the 5-year-old for his six month check up.

Oh, if only the world was round eh?

Jay

[Lynn White]

Jay

OK lets get a few few things cleared up! I did try and explain in earlier posts but obviously did not quite get the point across.

Optometrists do not have anything to do with the medical side of keratoconus, any more than GPs have anything to do with the creation of drugs or curing diseases. The medical side of KC is dealt with by ophthalmologists who are also surgeons. Optometrists provide and supply contact lenses and glasses. In this respect, we have no control over "cures". A good example is this: when I first came into optometry, a lot of my work was based around supplying contact lenses for people who had cataract operations. Rather like people with KC, they couldn't get on with the imbalance caused by having one eye without a natural lens and the only way round this was to supply a contact lens. We would fit lenses at the request of the ophthalmologist or "eye doctor". When medical research came up with intra-ocular implants, contact lenses were no longer needed and that part of our job became obsolete.

As it happens, modern surgical techniques for KC can combine CXL to stabilise the eye with phakic implants (similar but not the same as Intra_ocular implants) to correct the vision. In this way KC can be "cured" in the same way as cataracts can. This can be done now, today, privately. However, neither technique actually addresses the cause of the condition nor is preventative. No-one can stop cataracts happening and EVERYONE gets cataracts.

Contact Lenses: Yes in a perfect world we would all co-operate and work on getting one lens that would work for everyone world wide. We would also have only one make of drug for every condition world wide. There would only be one car manufacturer, one computer manufacturer, one type of house...... I know this sounds a little facetious but this is what you are asking - that the world suddenly abandons competition and business in the medical/eye field. In actual fact, competition amongst manufacturers (not distributors - they merely sell on products manufactured by others) tends to stimulate research and development - they are all striving to produce a lens that is comfortable, gives good vision and extended wearing times. Contact lens material manufacturers compete to get ever better lens materials. In one way yes, this can be seen as a waste of resources but this is how our world works.

Also, there are many different contact lenses around simply because one lens does NOT work for all cases of KC. If it did, there would be no demand for other types. Manufacturers often respond to requests from fitters who say... "I really need a lens that does this and that and the other.." and they go away and try and make it. Sometimes this R&D spills over into normal contact lenses but most often KC lenses are totally dedicated to KC/Irregular Cornea and not much else.

Having said all of that I do absolutely understand where you are coming from. For me, the clue to all of this is exactly as you said, the detection of the condition very very early. This needs optometrists to use topography to map corneas as a matter of course, for it to become part of the eye examination. Topography machines are now reducing in price but they still cost as much as a second hand car. Some practitioners may never see a case of KC in their lifetime, so there has to be some hard persuading to do to make them buy equipment to try and detect something as rare as KC.

Money: It is actually a hard fact of life that research into say, cancer or AIDS comes about not through the good hearts of government or altruistic individuals giving up their lives for the search for a cure.. but to efforts of charities and money raising events.i.e. it comes from the people who have the condition raising awareness and persuading others to help raise money which can be then used to employ researchers.

Advice: Yes you are quite right... a lot of optoms/ophthalmologists do not give enough advice and are quick just to a quick surgical/contact lens fix. This is why I spend a lot of my spare time on here giving that advice, as I feel strongly about this. I also lecture and put info on websites to try and give out as much info as I can. This education of the professions is also something all of YOU can help with.

Jay, you are right it comes down to time and money in the end... but its getting that money and persuading people to devote time to investigating KC that's the trick. Its not easy!

Lynn

[dazzabee]

Hi Lynn

Thanks for the detailed response!

Some questions I posed were a little tongue in cheek, if I am being honest. Of course, one lens, one cure etc, is a perfect sceneario and, as I have stated on other posts, everyone with KC requires something different. That will never change, I doubt. It must be said, though, that whilst optometrists are the ones fitting the glasses or CL, I still believe that they have some responsibility to learn more about KC before offering a fix. For example, you wouldn't go to a butcher and buy a pair of shoes. A butcher knows little about fitting shoes so he sticks to selling chicken becuase that is his trade and if someone tried to he would direct them to the shoe shop next door. That may seem slighly extreame as an explanation and I take your point about the cost of equipment and resources but then surly further down the line whether it is part of optom related degrees, the government, GMC, hospitals, specialists and/or all of us, more needs to be done and that should not be forgotten, as you quite rightly say.

Awareness is the key. Look how many people have heard of cervical cancer since the death of Jade Goody. Perhaps we can seek a celebrity with KC? Perhaps, also, that is where the responsibility of the optican and manufactures lie? A public figure would be great to raise awareness of KC and they can also be used to advertise a product, for example, footballer to promote a scleral lens as the "perfect sports lens" for example.

I also think that all those working in the medical industry - whether it be the eyes, legs, ears, nose, have a responsibility to seek the best option for that patient and know what that option is. Supply a fix for KC differs between patients. I just feel that when a doctor says "sorry, you have cancer" that medic is aware that there are many types of cancer due to the training and/or research he has done. I feel that when an optometrist diagnoses KC those same variables are not often mentioned or worryingly, not even known. Is training an issue here?

Jay

[rosemary johnson]

Look at this from a patient's pointo f view:
I was diagnosed with this strange eye condition no-one in my family had ever heard of before, aged 14.
I'd developed strange shaped eyes.
I might have wondered "why?" and no doubt no-one knew. I wasn't surprsied to be needing some form of eyesight correction (however depressing it had first been when first diagnosed as short sighted) as so did most of my family.
SO now I had odd-shaped eyes and was going tohave to wear contact lenses.
Wow, glamour!! (this weas a few eyars ago, when wearing lenses was rare.)
They worked! I could see great in them. I got used to them, building up the wearing time.
Every so often, I needed a new pair.
So what? Every so often, my mum needed new glasses.
Was I interested in why I had these odd-shaped eyes? NOt particularly. It had happened now.
What difference did it make to me?
NOne - it had happened by now.
When I first heard, many years later, there might be "KC genes", it was interesting, in an academic way, but not particularly relevant.
It was sort of interesting in an academic curiosity kind of way that they may have been a trigger factor, though what the trigger factors were no-one was quite sure.
Didn't seem at all relevant - it had happened now.
Now, at the time, maybe I was a little naive in that I didn't know that it was possible this strange condition might dvance till my eyes got so odd-shaped it would not longer be possible to get both good visiona nd good comfort (let alone not either) from my contact lenses.
If I had, would I have been more interested in wondering what the trigger factors were?
Maybe!
But if I'd had any patronising git male medics (as they all were, in my experience!) telling me not to rub my eyes, Od probably only have done it all the more! - that belonged intthe sort of stuff mothers say, like telling you not to read by torchilight nder the blankets or you'll give yourself eye strain, or not to screw your eyes up to read, or to go to bed ridiculously early, or to wrap up warm when you go out, dear, or you'll catch your death of cold, or r or....
And if eye-rubbing gives KC, then my dad would have been a prime candidate!
Maybe id have been a whole lot more interested, in a personal and practical matter, if I'd ever wanted kids and wondered if they might get KC too.
Maybe I'd have been more interested in stopping progression if I'd known I would be now be thorougly regretting a graft operation gone disastrously wrong.
though maye by then it would have been a bit late.
What has been of much more interest to me, having had 4 of the things, is what causes hydrops. In that, if I could know how to avoid having the world suddenly go compltely white-out again at a particularly inappropriate time, I'd like to know how. SO far as I gather, no-one knows that either, though doubtless the people who tell you not to screw your eyes up, not to read under the duvet and to eat up all your nice greens would tell you not to rubyour eyes.
WHich comes to cures and preventation:
Trouble with KC, it can suddenly ppo up in people with no family history, who've enver heard of it before. By the time they've got it, it's too late for prevention.
The nearest to a cure is CXL - maybe more accurately, damage limitation.
ANd with more people being diagnosed earlier, CXL more possible in more cases.
Most people who are diagnosed with KC, they get fitted with contact lenses, and they're fine. They wear their lenses and see fine with them, and get on with their lives. No problems. NOt an issue. Plenty of people wear contact lenses through choice anyway, so what's the issue?
If you're in that category, the condition is well managed and not a problem, so who cares what caused it? DO the people who wear contact lenses for ordinary short-sightedness bother asking about why they got it and what brought it on?
I'm wondering if, in a sense, the existence of groups like this is actually prompting more people to worry about why they got KC and what caused it to developand what may cause it to progress? - since they can see/hear people with more advanced cases and start to worry if they'll get like that - whereas a few years ago, most of us who were perfectly happy getting on with life with lenses would never normally know anyone with KC any worse, so not see a need to worry about such things.
i also wonder where in all this one might fit in something I've heard Ken mention several times now: until a few years ago, hospital clinic never saw any old people with KC. Newly-diagnosed fairly young people, yes, but then they disappeared. This apparently is changing; why?
SOrry this is a bit diverging-form-topic in its discursiveness.....
Rosemary

[Lynn White]

Hehe.. this is turning into quite a useful discussion!

I actually did put in a section about a celebrity in my last post but deleted it as the post was getting quite lengthy. In fact this is what happened in the US where an actor got KC and as a result founded the NKCF. Yes, if a major celebrity got KC and was willing to do a "Jane Goody", then this would make a huge difference.

Now then - education. Exactly. When I lived in Trinidad, I got involved in establishing the first Optometry School in the Caribbean there. It was slow work but last year I conducted the Committee who were responsible for setting up the course on a tour round the UK's Optometry Departments. As KC is a big issue in Trinidad, we asked how it was taught at every department and the replies were discouraging. Teaching really amounted to a few lectures and no practical experience fitting KC.. why? Health and Safety issues. Letting students loose on normal people can be a bit hair raising but no-one wanted to take responsibility for them practising on KC eyes. Any fittings done in the departments were generally only done by qualified staff.

Added to that - "normal" RGP fittings in the HIgh Street are now rare in the UK, so proportionally less time is spent teaching the subject. Hence most of the learning is done "on the job". Optometry over the years has become more and more commercial due to many factors I won't go into here and the emphasis is now on throughput. With the advent of internet and supermarket sales of contact lenses, many practices give up fitting even soft disposables - patients don't want to pay for a fitting let alone the price for lenses practices have to charge to cover their overheads.

Thus the contact lens field itself is struggling in the current climate.It is very hard for any practitioner who works for someone else to justify the extra chair time to fit keratoconus. Yet... I do honestly believe that there is a way forward here. Laser clinics all have topography machines and just as in the area of glaucoma, practices that have expensive field screening equipment will do visual fields on a patient for a low fee and refer back to the original practitioner, so I feel High Street optoms could come to an arrangement with a practice that does have topography to do scans for him/her.

Again, I have always felt that impetus has to come from people with KC. Whenever I have argued for better training or better patient information, someone will always say - "Yes, but we don't have any complaints!" I gave a lecture last week where I was trying to explain that many KCers spend their time juggling the wear of uncomfortable lenses or indeed give up wearing them and often only put them in for check ups. A practitioner took issue with me and reckoned all his patients got decent wearing times with rigid lenses. We argued back and forth a little but in the end his attitude was that I was saying his patients lied to him. I don't blame him as really as you guys tend to have a stiff upper lip where lenses are concerned -especially when you think its your only option.

You see where I am coming from? If YOU - the KCers - don't campaign for these things, no-one will take any notice of anyone else who tries to. If after an appointment, you felt you had not had the right sort of information given to you, you wrote and politely explained your thoughts to the hospital (most people don't want to make a fuss as they are worried they will be labelled troublemakers) eventually the point would be made.

Another thing that would help is if KC groups worldwide talked to each other more and shared experiences. Although KC is rare in each country, the combined numbers would amount to a group to be reckoned with.

Oooh just seen your post Rosemary... some good points there! I could well have said, actually, most people with KC get on with it and don't give cause a second thought... but then that sounds patronising from an Optom, so I am glad you brought it up! However, for those who do not "just get on with it", I think all the points Jay brought up are relevant.

Lynn

Lynn

[rosemary johnson]

Lynn, I suspect your interlocuter may well be correct in that most of his patients get the wearing time they claim.
The ones who don't, I suggest, vote withtheir feet and don't come back so aren't his patients any more.
I don't suppose you asked him what his patient turnover rate was??
As regards interested in cause: the genetics stuff is interesting, as would be trigger factor research.
INteresting, at a curiosity level. The talk Steve Tuft gave at the group AGM a couple of years back was interesting, and I'm sure when his project finishes and reports back, what he says about it then will be interesting too.
[Yup, I did just say that!!!!!!]
Maybe these days people are more likely to ask "why?" questions of the health care professions.
NOt particularly useful once one has already got the condition.
Trouble is, to be able to do any prevention, you'd have to find the people liable to develop KC>
YOu'd have to test an awful lot of people to find each one with a genetic susceptibility.
You'd have to find a lot of those to find each one who'd actually go on to develop KC if left alone.
You'd have to find a lot of those to find each one who'd ever actually get KC developing beyond the stage where they just wear their contact lenses and get on with their life like anyone else who wears contact lenses.
Meanwhile, how much panic or upset are you causing to people who'd never get KC, and how many are going to be subjected to medical interventions that wouldn't actually ever have been necessary?
This is already an issue with CXL - how many people who have CXL would never have progressed beyond ordinary lens wear anyway? - so how much so with screening programmes?
And - yeah, it always comes back to this, doesn't it? - how much does the screeningn programme cost for how little benefit?
There's also the sociological impacts of mass screening - it tends to be the better off, better educated, more articulate, living in better areas, etc, people who are more likelyt o take up the screening programmes. ANd hence who are more likelyt o be (or their kids to be) subjected to the procedures that may be unnecessary.
WHile the condition in question increasingly becomes one associated with poverty, deprivation, high proportions of immigrant/refugee/non-English speaking people in the population, poor areas with overstretched health services, high numbers of teenage pregnancies, etc.
All of which are good descriptions of the area where I live......!
I digress again.....
Rosemary

[dazzabee]

It appears we are singing off of the same hymn sheet Lynn. I couldn't agree more with what you said.

Perhaps more is being done by optoms than I know and perphaps more research is being carried out than I know? However, I firmly believe the patients are always the most important people and have the biggest voice when it comes to ANY disease/illness/condition/edidemics/AnythingElseIHaveForgotten. That's why this group (and others around the world) are so important. But, to go from important to useful it requires more than reading the site and posting on a forum.

Lynn, the net time you attend one of these debates if you need a KC guinea pig to argue a point, proove an argument or whatever, let me know. Sadly, due to the the R word I am currently "in between jobs" so time is of the essence., For any commitee member out there, let me know if you want any help. In the mean time I have some things I am doing but I won't say too much at the moment on a public forum at this stage!

The point Rosemary makes is all too common and that is fine, BUT, that should never be the attitude of the Optom, when sometimes I think it may well be.

[Andrew MacLean]

Now here is the tension that has always existed: someone presents with a condition that can be managed, but given the present state of knowledge and understanding, the condition cannot be cured.

Of course you would do everything in your power to mitigate the effect of the condition and enable the person to live as normal a life as possible. You would also want to find out what can be known about the condition, possibly treat it and maybe even find measures that can prevent others developing the same condition.

Both approaches are important, and it may be said that the development of ways to manage the condition are of more immediate relevance to those who have it than the more reflective approach that may eventually lead to strategies that will cure or prevent the condition.

Those who develop new contact lenses, treatments like INTACS, CXL and even grafts are all, it seems to me, in the first category: they are ways to mitigate the effect of the condition on those of us who live with it.

There is also a need for research into the other main area of concern; this is, in a sense, unrelated to the first, but in the long run it may be more important.

Andrew

[GarethB]

As soon as I get my MSA licence and get a car sorted (need money for that first) I pldege to do my best to be competative and become famous in the world of motor sport

[Andrew MacLean]

Some say that he looks at the world through other people's eyes, and others that when he sleeps his sunglasses turn clear. All we know is that he's called

Gareth B

IOW: could Gareth be the next Stig?


Andrew