KC Genetics

[Andrew MacLean]

This was new current work; the aim was not to establish a link between trace element deficiency and KC (that link has been long established). The aim was to develop a delivery system for targeted elements that did not involve diet.

[Lynn White]

I.e. drops?

[Andrew MacLean]

Didn't say in the research protocol that I saw, but I also assumed so

Lynn, maybe you have a greater understanding of these things that I do; why do scientists mangle the language?

Andrew

[Lynn White]

Andrew....

After reading several of these genetic study reports I am ready to eat my mouse! They are totally unintelligible! I think there is a rule: the more obscure the language, the more academic a paper is deemed.

Lynn

[Andrew MacLean]

With that proposition I find myself in complete and unambiguous concurrence. Indeed so congruent is my own perspective with that articulated by you, it would be fair to say that, top an extent either greater or lesser, I agree.

[dazzabee]

I am now more confused than confused. I wish these qualified folk would talk in proper English, innit. The rest of us with KC may be able to understand then!

One interesting point.

My late Grandmother who died in the early 1980s when I was 3 was told some time before ( Dad believes in the mid 60s) that she had less than 20% vision in one eye and nothing was done. Sadly she lived like this for the rest of her life but from the way her vision was described to me (via Dad) it sounds very KC like. I seriously think genetics is something we should take seriously but I would also prefer time and money is spent in other areas. However, without contradicting myself, if gentetics prooves the answer to finding solutions/resolutions then I am all for it. I do find it perplexing, though, on a serious note that those unqualified in medicine (and indeed those even qualfied) find it so hard to read many of the studies produced on KC, such as those listed by Lynne.

It also scares me that many qualfied optometrists have such little knowledge. Is this down to lack of training or simply that the training provided is so complicated (i.e. the inclusion of said papers) that often optoms understand as much as the rest of us?

Final controversial point. I was told 15 years that KC may be linked to those suffering from allergies, namly, hayfever. I was again told this 2 weeks ago by A.N. Other the same thing but said person had no further knowledge. Has nothing been learnt in 10 years about the condition and is the easy option now to just fit lenses and say "we have found the resolution to your condition" rather than actually saying "I know what caused your condition and this is how we are going to cure/resolve it" and then look to prevent it for the next generation? Has KC become a condition for contact lens providers to make the money rather than optoms/scientists/researchers to earn their money?

[Andrew MacLean]

Actually Daz your final point is not all that controversial: there does seem to be a relationship between KC and allergies. Problem is, this does not answer the question "what triggers allergies"? What makes the immune system turn in on itself and react to the ordinary environment as if it were a threat?

One theory often spoken of is that when we are growing in the world, our immune system is primed and ready to defend us against all sorts of things that we might touch or ingest. But if we live in a sterile environment, our immune system latches onto all sorts of innocuous things and reacts to them.

All need for more general science research, but all the cash is going to genetics.

The pendulum will swing back, and funding bodies will become less enamored of this year's fashion king. In the meantime, the clock is ticking and more people will live their lives with keratoconus without progress being made in important areas of enquiry.

You make good and telling points.

Andrew

[Graeme Stevenson]

It also scares me that many qualfied optometrists have such little knowledge. Is this down to lack of training or simply that the training provided is so complicated (i.e. the inclusion of said papers) that often optoms understand as much as the rest of us?

Final controversial point. I was told 15 years that KC may be linked to those suffering from allergies, namly, hayfever. I was again told this 2 weeks ago by A.N. Other the same thing but said person had no further knowledge. Has nothing been learnt in 10 years about the condition and is the easy option now to just fit lenses and say "we have found the resolution to your condition" rather than actually saying "I know what caused your condition and this is how we are going to cure/resolve it" and then look to prevent it for the next generation? Has KC become a condition for contact lens providers to make the money rather than optoms/scientists/researchers to earn their money?

I think the lack of knowledge by Optoms comes from a number of reasons. In the past if KC was suspected then they would be referred to an Ophthalmologist who would then refer to the hospital clinic for CL Fitting. This patient is then generally never seen again by the Optometrist and hence little knowledge is gained on any aspect of the condition.This has changed a little recently as the hospital clinics are being reduced to save costs. This has lead to some CL fitting being sent back to the High St Optometrist resulting in a greater awareness and knowledge of KC by certain interested individuals. Of course the condition is still relatively rare so will not be seen regularly by many optometrists.There is still a fear of fitting KC patients with CL's and many take the easy option of referring either to the hospital or to an interested colleague.

As to why no research is carried out on the prevention/cure of KC I really have no idea. The clever academics would need to answer that question.Is it a little like the drugs companies not wanting to cure diabetes due to the huge profits they make from treatments?I think it is a slightly different arguement with KC in that there probably isnt enough money to be made in finding a cure to merit the research required.Of course that is not a valid reason but is my opinion for what it is worth.

[Lynn White]

The problem is that KC is generally invisible. You can't see it and most people cannot understand it even if you explain it. Treatment is tucked away in hospital clinics, so many optoms are not even aware of the numbers in their local area. In fact, if you try and get numbers that pass through any particular hospital clinic, they are often not recorded. The general numbers are too small to be noticeable in a community and in the countries where the numbers are far larger, there is not the research infrastructure available.

Another problem is that KC is manageable with contact lenses and this has been the case for many years so that there has not been any pressing need to rush and find a cure. Most people used to be fairly advanced by the time it was detected so it was just a case of getting on and dealing with it.

However, several things have happened to change that over the last few years. Cross linking is one and detection of early KC in laser clinics is another. Suddenly you have a whole new group of people who are threatened by a sight condition at the same time a new treatment is becoming established to halt it. There now seems more point to finding ways to detect it earlier or indeed to screen for it. With earlier detection comes the question - is there a way to stop this progressing without having to resort to CXL? To accomplish this, you need to find the causes and although I do take the point that genetics is possibly over subscribed at the moment, scientifically, one should understand the mechanism of a condition before trying to create treatments for it. For example, it wasn't until science established that cholera and dysentery were spread by contaminated water supplies that the diseases were largely eliminated by creating good, clean water systems. Previous attempts to cure the conditions were confounded by people dabbling with various ideas.

So, for example, although it is known that allergies, dry eyes, magnesium lack, eye rubbing and so on are all implicated in KC, it is also true that there are lots of people who have allergies, rub their eyes, have dry eyes and so on who do NOT develop KC. If they did, we would have a major epidemic on our hands.Since there appears now to be increasing evidence of genetics involved, that is why such attention is being given to it. Once the background is known, then the other connections start to fall into place.

Of course, this does not mean other research should not take place. I am just explaining the rationale. It was when I was in Trinidad that I saw how weird things can get in medicine. There is a form of paralysis in the Caribbean which has a very specific aetiology: a person has to have come in contact with a very old retro virus - a precursor to AIDS - and have eaten the meat of a wild animal such as an armadillo, which itself had to have eaten the nuts from a very specific palm tree that is found at a very particular latitude around the world. There are sufferers in a belt worldwide where this palm tree grows...I had never even heard of it until I went to the Caribbean.

So it may be that a genetic predisposition, combined with many other factors, all contribute to development of KC. Although research does seem spread unevenly at the moment - at least research is going on!

Lynn

[GarethB]

Stem cell research although controversial in some areas has shown sucees in the treatment of diabeties and may lead to a cure. Similar research is being done regarding asthema so you never know might lead to KC.

Although drug companies will not make much money from the likes of us it is also argued that we are more complex so funding required is higher. If things like diabetes were cured along with some of the more common deseases, then funding might be freed up for us too.

The other problem with us being a minority group it is much harder to find people willing to try new treatment ptions.

Basic fear of the unknown.