Arampal
On the internet you will find figures for KC that range from one in ten thousand to one in five hundred!
I don't think they know!
For my part, I'd prefer that it was 'fairly common' since that way we have a better chance of attracting research resources and finding out the cause and securing a cure!
Andrew
What an absolute coincidence
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Andrew MacLean
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- Keratoconus: Yes, I have KC
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Paul Morgan
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- Keratoconus: Yes, I have KC
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GarethB
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- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
at the AGM, one of Mr Tufts slides showed KC incidence in different ethnic groups and i think KC was far higher in Assian and Afro Caribean and these were both higher than African.
Do not know if the distinction by having an Afro Caribean group is due to any mixing of different ethnic groups, but I think KC was by far rarer in caucasion community.
It probably depends who and where the study was done as to how common KC is perceived.
Do not know if the distinction by having an Afro Caribean group is due to any mixing of different ethnic groups, but I think KC was by far rarer in caucasion community.
It probably depends who and where the study was done as to how common KC is perceived.
Gareth
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Lisa Nixon
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I've never actually bumped into anyone in person who also has KC.
However, while I was in Queensland, Australia in March for my brother's wedding, I had a severe allergic reaction to prawns and the doctor I saw happened to be Irish. When I mentioned I had KC and eczema, too, he said his daughter had it.
Long way to go to finally meet a KC connection!
Keep looking for rainbows.
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Andrew MacLean
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Lynn White
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Gareth..
Just to confirm, yes it's higher in Afro-Caribbean and Asian populations. Thats why it is so prevalent in Trinidad, where I worked for 3 years, because that island is 50-50 between these two groups with a good deal of intermarriage. Its also very high in Puerto Rico which has a broader mix of populations.
It IS much rarer in Caucasion populations, but you do have clusters - quite a few in remote parts of Europe, mostly in isolated spots where the population has been "concentrated" by intermarriage.
It has always struck me as being slightly odd that over the years researchers have doggedly stuck to where THEY are to study KC rather than go to where it is more frequently observed. I saw a long term study once in a US state, I think it was Pennsylvania, where over a period of 70 years they gathered just 60 cases. (This was a while back, I hasten to add). This was not to study it in that population (which is therefore understandable) but supposed to throw light on the condition itself!
You could quite easily find 60 KC'ers within a one year study on either Trini or Puerto but its not actually studied on the islands at all. Nor are there any simple stats to actually pin down the rate.
Then, of course, it depends on how you define and diagnose KC. You would get a much higher rate in any population if you included all those that didn't progress and didn't have symptoms that reduced useful sight.
There are no accurate figures for KC because there has been no large scale study covering different populations. Current figures come from extrapolating from small studies which goes back to the beginning - it depends WHERE you do the study!
The laser clinics are throwing up more cases and therefore it is becoming more "common", which is as Andrew said, better news for KC as eventually it will contribute to attracting more research money.
However, just to put this in perspective, the high levels in Trinidad have not attracted any Govnt attention at all. There are no hospital clinics there, so every KC'er has to go privately. Although the general cost of living is lower than here, optical costs for specs and lenses are no different but salaries amongst the general population are about a tenth of ours.
It is therefore not unusual to see really advanced cases of KC that had never been diagnosed and never had a contact lens near them! (Which was very interesting from an academic point of view, comparing levels of corneal scarring etc with UK KC'ers who generally get picked up and treated at least when the better eye starts deteriorating)
It is a different perspective out there. Whereas here, generally KCers are fighting to get better lenses etc etc.. over there it is a struggle to even get the basic CL's we have over here, as in affording them and even availability. For instance, there is no lab that can make sclerals (though I think Ken once went over there to try and help get something off the ground but it never panned out)
They do have grafting facilities, but the donor corneas have to come from other sources... there is not an actual Trini donor bank.
Anyway, sorry to go on here but I thought it might be interesting to see what being KC is like elsewhere!
Just to confirm, yes it's higher in Afro-Caribbean and Asian populations. Thats why it is so prevalent in Trinidad, where I worked for 3 years, because that island is 50-50 between these two groups with a good deal of intermarriage. Its also very high in Puerto Rico which has a broader mix of populations.
It IS much rarer in Caucasion populations, but you do have clusters - quite a few in remote parts of Europe, mostly in isolated spots where the population has been "concentrated" by intermarriage.
It has always struck me as being slightly odd that over the years researchers have doggedly stuck to where THEY are to study KC rather than go to where it is more frequently observed. I saw a long term study once in a US state, I think it was Pennsylvania, where over a period of 70 years they gathered just 60 cases. (This was a while back, I hasten to add). This was not to study it in that population (which is therefore understandable) but supposed to throw light on the condition itself!
You could quite easily find 60 KC'ers within a one year study on either Trini or Puerto but its not actually studied on the islands at all. Nor are there any simple stats to actually pin down the rate.
Then, of course, it depends on how you define and diagnose KC. You would get a much higher rate in any population if you included all those that didn't progress and didn't have symptoms that reduced useful sight.
There are no accurate figures for KC because there has been no large scale study covering different populations. Current figures come from extrapolating from small studies which goes back to the beginning - it depends WHERE you do the study!
The laser clinics are throwing up more cases and therefore it is becoming more "common", which is as Andrew said, better news for KC as eventually it will contribute to attracting more research money.
However, just to put this in perspective, the high levels in Trinidad have not attracted any Govnt attention at all. There are no hospital clinics there, so every KC'er has to go privately. Although the general cost of living is lower than here, optical costs for specs and lenses are no different but salaries amongst the general population are about a tenth of ours.
It is therefore not unusual to see really advanced cases of KC that had never been diagnosed and never had a contact lens near them! (Which was very interesting from an academic point of view, comparing levels of corneal scarring etc with UK KC'ers who generally get picked up and treated at least when the better eye starts deteriorating)
It is a different perspective out there. Whereas here, generally KCers are fighting to get better lenses etc etc.. over there it is a struggle to even get the basic CL's we have over here, as in affording them and even availability. For instance, there is no lab that can make sclerals (though I think Ken once went over there to try and help get something off the ground but it never panned out)
They do have grafting facilities, but the donor corneas have to come from other sources... there is not an actual Trini donor bank.
Anyway, sorry to go on here but I thought it might be interesting to see what being KC is like elsewhere!
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Tina Sweetland
- Contributor
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- Location: Bournemouth,Dorset
I had heard that only one in 10000 has KC..but I know 3... other people ..none of whom are related to me. One I met at the eye hospital (he worked with me but I didn't realise he had KC until I met him at the eye hospital). One is a friend of the family. One is the husband of another friend of ours...weird...mind you none of them have had grafts yet...all cope with differing lenses....
Tina Sweetland
Yes I know it's a Welsh flag...with a maiden name of Evans?...need I say more?
Yes I know it's a Welsh flag...with a maiden name of Evans?...need I say more?
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Andrew MacLean
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- Keratoconus: Yes, I have KC
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- Location: Scotland
I once got a scare at a hospital clinic. Everybody seemed to have had a graft.
Doh (as pronounced by Homer Simpson)
Of course they had; that was why they were at the clinic! The same sort of thing works here.
I am looking forward to the forum being a place where people who have had lots of things done, or who cope in lots of ways all chime in with their experiences; positive and negative, so that the dream of its long ago foundation can at last be realized, and day will dawn on a happier healthier Great Britain ... .. ... ...
Doh (as pronounced by Homer Simpson)
Of course they had; that was why they were at the clinic! The same sort of thing works here.
I am looking forward to the forum being a place where people who have had lots of things done, or who cope in lots of ways all chime in with their experiences; positive and negative, so that the dream of its long ago foundation can at last be realized, and day will dawn on a happier healthier Great Britain ... .. ... ...
Andrew MacLean
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