Hi Everyone,
My name is Barinder and I am from India. I have a question and will be grateful if someone can answer to it. I would like to throw some light first on my eye condition. I am 27 right now and had never worn glasses or contact lenses in my life till the start of this year. Not to mention I never felt that was my eyesight was falling till the start of this year i.e Jan, 2002.
Than I started developing discomfort while working on the computer and got my eyes checked. I was suggested to wear glasses and the eye disorder Keratoconus was found just some months back. Now my number is -6.5 for the right eye and -2.5 for the left.
My question is will my eyesight keep on getting worse or is there any hope at the end of the tunnel. Is surgery a solution to it?.
My mail id is: berrisuri@yahoo.com
I will appreciate the help. *_*
Regards,
Barinder
Quicktopic posts: Dec 2002
Moderators: Anne Klepacz, John Smith, Sweet
-
Dal
Thanx for the reassurance John!
Hi Freddy,
Great that sum1 is in the same line of work,
I alreday worked in a secondary school in the SEN dept as a sprt of 'unqualified teacher', and I didnt know that I had KC then, I had all sorts of probs,especially reading off the whiteboard during staff breifings! made myself look really silly sometimes!just wanted to ask what sort of problems, if any, that u have because of the KC? Just to be prepared!
Thanx
Dal
Hi Freddy,
Great that sum1 is in the same line of work,
I alreday worked in a secondary school in the SEN dept as a sprt of 'unqualified teacher', and I didnt know that I had KC then, I had all sorts of probs,especially reading off the whiteboard during staff breifings! made myself look really silly sometimes!just wanted to ask what sort of problems, if any, that u have because of the KC? Just to be prepared!
Thanx
Dal
-
gemstone@umbilical.demon.
There seems to be a lot of hydropses about at the moment.
I wonder if the group could produce a "Hydrops Fact Sheet"... or at least a "Hydrops FAQ page".
Maybe one of the "medical experts" could do the technical bit
about exactly what it is that breaks, and "survivors" could chip in experiences?
My first question is: what is the plural of "hydrops"?
To Kate - that does sound like progress, if your iris is
becoming visible again. Mine have cleared from the edges, so
the middle of the eye was still cloudy-white and the edges
became visible first. Also the vision returned round the edges
first, so keep looking there.
Hope the rest clears soon - but it does sound as if it's going
in the right direction. Same to harpo, hope yours starts to
clear like Kate's soon. Hang in there, both of you!
Rosemary
--
Rosemary F. Johnson
I wonder if the group could produce a "Hydrops Fact Sheet"... or at least a "Hydrops FAQ page".
Maybe one of the "medical experts" could do the technical bit
about exactly what it is that breaks, and "survivors" could chip in experiences?
My first question is: what is the plural of "hydrops"?
To Kate - that does sound like progress, if your iris is
becoming visible again. Mine have cleared from the edges, so
the middle of the eye was still cloudy-white and the edges
became visible first. Also the vision returned round the edges
first, so keep looking there.
Hope the rest clears soon - but it does sound as if it's going
in the right direction. Same to harpo, hope yours starts to
clear like Kate's soon. Hang in there, both of you!
Rosemary
--
Rosemary F. Johnson
-
harpomatrix@yahoo.co.uk
Hello
I think that would be a good idea to have some infor on acute hydrops on the site or in some kind of publication by this site as it develops as a result of keratoconus. I would like to know what the experts say or whatever.
I was just reading Susan Mason's post and it got me a little worried. I'm 19 and wondering how much of an effect having keratoconus will have on my life. Its scary to think that things could get worse as they are bad enough already. I was told by the doc that once my hydrops clears I will be put in for surgery on the eye.
The idea of the graft worries me and makes me wonder how long I will be able to see out of my "good" eye (which isn't that good anyway)
Reading Susan's just got me thinking. Even after the hydrops clear its just going to be one thing after another.
I think that would be a good idea to have some infor on acute hydrops on the site or in some kind of publication by this site as it develops as a result of keratoconus. I would like to know what the experts say or whatever.
I was just reading Susan Mason's post and it got me a little worried. I'm 19 and wondering how much of an effect having keratoconus will have on my life. Its scary to think that things could get worse as they are bad enough already. I was told by the doc that once my hydrops clears I will be put in for surgery on the eye.
The idea of the graft worries me and makes me wonder how long I will be able to see out of my "good" eye (which isn't that good anyway)
Reading Susan's just got me thinking. Even after the hydrops clear its just going to be one thing after another.
-
Susan Mason
Harpo
Don't worry about my problems I may just be an odd case, who knows? I was nearly 30 yrs old (5 months before my birthday) before they told me I had Keratoconus and for the first 2 years after that things were slow progressing. It just seems that at present the last 7 months have been very challenging - I didn't write last night to try to frighten anyone or paint a horror story in the main I am fine. I just get really frustrated not being able to do things that I took for granted, you will probably laugh but in August I took my first bus trip for nearly 15 years - now I remember why I got a car! Hope all goes well for you. Susan.
Don't worry about my problems I may just be an odd case, who knows? I was nearly 30 yrs old (5 months before my birthday) before they told me I had Keratoconus and for the first 2 years after that things were slow progressing. It just seems that at present the last 7 months have been very challenging - I didn't write last night to try to frighten anyone or paint a horror story in the main I am fine. I just get really frustrated not being able to do things that I took for granted, you will probably laugh but in August I took my first bus trip for nearly 15 years - now I remember why I got a car! Hope all goes well for you. Susan.
-
gemstone@umbilical.demon.
Hallo Susan. Sorry to hear you've been having a rough time.
I'm afraid it can take some time to sort out KC and get you
lenses or other approach that is manageable.
You don't say where you live and which hospital you're going to
- some of them do seem to be more worried about little bits of
abrasion than others. Unfortunately there is always a trade-off between comfort (short-term, ie. do your eyes feel comfortable
today), good vision, and long-term comfort (will you build up
abrasion or grow extra blood vessels inthe wrong places over a
long period of use)? FOr some of use, the best approach to this compromise is not always the same as the one the hospital would
normally first think of.....!
hope you get some better joy at your next appointment. No doubt others on this list will be advising you to try scleral lenses.
my employers
lost the plot and decided that I was a H&S risk so I was banned from the premises (I had alresdy had seral months off initially and was now ng to do as much as I could work wise to ensure I
did not loose my job,all circumstances being taken into
account)
Hmmmm! Where do you work and what doing?
It sounds to me as if your employers are getting suspiciously
close to breaking the Disability Discrimination Act, and leaving themselves open to you taking them to a tribunal for
discrimination. There aren't many workplaces around where you'd really be a H&S risk, and as KC is a condition that doesn't go
away, it's going to be with you for well over a year, it counts
as a "disability" under the terms of the act. I suggest you
talk to your union, or some organisation which is well-informed
in this area, about the DDA. Unfortunately, there are still a
disgusting number of ignorant and bigotted employers out there.
it is possible you may need special/adapted equipment to do your job - under the DDA your employer is obliged to make "reasonable adjustments", and there are sources of funding for these. The
RNIB or the Disability Employment Advisor at your local job
centre should be able to equipment and funding, and if you're in reach of central London you may like to drop in at the RNIB show
rooms and look at the types of adapted equipment available.
It seems if I get contacts my
wearing time will be limited and I will probably have to use
this time at work. No more TV reading etc I cant even see the
letters on my 5 1/2 year olds reading books without screwing my eyes up - not a solution that works long term
I know that feeling - she types, screwing her eyes up to read
the screen ........
What sort of
standard of sight should I expect, some American literature I
have mentions they would aim to get you driving if nothing less - should I be shoulting up at the hospital a bit more?
Vision does seem to vary enormously. I certainly wouldn't
"expect" (in the sense of England Expects...) to be able to see
well enough to drive ever. By UK standards, anyway; US driving
license requirements are (or were) lower than ours, so maybe
their eyesight test is too.
What it would certainly be worth shouting at the hospital about
is how hard it is to work, and the danger you feel about losing
your job. I've certainly come across situations where hospitals give greater priority to someone if it is a quiestion of keeping them in work.
From what you say about your wearing time, you should be able to get registered as partially sighted - and I'd strongly advise
shouting about this at the hospital to get them to do it (the
medics have to sign a big form certifying your condition, then
it gets sent to your local council who will put you on their
register and be in touch. You may find, as I did, that there
are doors to training, advice, etc, that sadly do not open
unless you have a registration number; depending on where you
live you may get the famous "bus pass", and you'll be able to
get any necessary special equipment without VAT. And please
don't let anyone at the hospital put you off by talking about
"stigma" and need to declare it: the DDA works in different
terms independent of registration so that no longer applies.
Hope you get sorted out soon and have some lenses you can wear
and see well from.
Rosemary
--
Rosemary F. Johnson
I'm afraid it can take some time to sort out KC and get you
lenses or other approach that is manageable.
You don't say where you live and which hospital you're going to
- some of them do seem to be more worried about little bits of
abrasion than others. Unfortunately there is always a trade-off between comfort (short-term, ie. do your eyes feel comfortable
today), good vision, and long-term comfort (will you build up
abrasion or grow extra blood vessels inthe wrong places over a
long period of use)? FOr some of use, the best approach to this compromise is not always the same as the one the hospital would
normally first think of.....!
hope you get some better joy at your next appointment. No doubt others on this list will be advising you to try scleral lenses.
my employers
lost the plot and decided that I was a H&S risk so I was banned from the premises (I had alresdy had seral months off initially and was now ng to do as much as I could work wise to ensure I
did not loose my job,all circumstances being taken into
account)
Hmmmm! Where do you work and what doing?
It sounds to me as if your employers are getting suspiciously
close to breaking the Disability Discrimination Act, and leaving themselves open to you taking them to a tribunal for
discrimination. There aren't many workplaces around where you'd really be a H&S risk, and as KC is a condition that doesn't go
away, it's going to be with you for well over a year, it counts
as a "disability" under the terms of the act. I suggest you
talk to your union, or some organisation which is well-informed
in this area, about the DDA. Unfortunately, there are still a
disgusting number of ignorant and bigotted employers out there.
it is possible you may need special/adapted equipment to do your job - under the DDA your employer is obliged to make "reasonable adjustments", and there are sources of funding for these. The
RNIB or the Disability Employment Advisor at your local job
centre should be able to equipment and funding, and if you're in reach of central London you may like to drop in at the RNIB show
rooms and look at the types of adapted equipment available.
It seems if I get contacts my
wearing time will be limited and I will probably have to use
this time at work. No more TV reading etc I cant even see the
letters on my 5 1/2 year olds reading books without screwing my eyes up - not a solution that works long term
I know that feeling - she types, screwing her eyes up to read
the screen ........
What sort of
standard of sight should I expect, some American literature I
have mentions they would aim to get you driving if nothing less - should I be shoulting up at the hospital a bit more?
Vision does seem to vary enormously. I certainly wouldn't
"expect" (in the sense of England Expects...) to be able to see
well enough to drive ever. By UK standards, anyway; US driving
license requirements are (or were) lower than ours, so maybe
their eyesight test is too.
What it would certainly be worth shouting at the hospital about
is how hard it is to work, and the danger you feel about losing
your job. I've certainly come across situations where hospitals give greater priority to someone if it is a quiestion of keeping them in work.
From what you say about your wearing time, you should be able to get registered as partially sighted - and I'd strongly advise
shouting about this at the hospital to get them to do it (the
medics have to sign a big form certifying your condition, then
it gets sent to your local council who will put you on their
register and be in touch. You may find, as I did, that there
are doors to training, advice, etc, that sadly do not open
unless you have a registration number; depending on where you
live you may get the famous "bus pass", and you'll be able to
get any necessary special equipment without VAT. And please
don't let anyone at the hospital put you off by talking about
"stigma" and need to declare it: the DDA works in different
terms independent of registration so that no longer applies.
Hope you get sorted out soon and have some lenses you can wear
and see well from.
Rosemary
--
Rosemary F. Johnson
-
Sue Ingram
Hi Susan (1228), Welcome to the site and sorry that you are experiencing alot of problems at the moment - part of KC I'm afraid; there seem to be periods when everything is hunky dory and other times when nothing is going right at all with eyes, lenses etc, etc. I agree with Rosemary that you need to investigate the situation with regard to your job - I am sure they should not be treating you like that.
As you are having so many problems with wearing time of rgp corneals, have you thought of trying scleral lenses? I had worn corneals for 20-odd years before my eyes decided enough was enough and I just could not keep them in, but of course I could not function without them in - catch 22! After about a year of pure hell, sclerals were suggested and they are great - 100% more comfortable then corneals, no contact on the cornea (therefore no adhesions), cannot fall out, cannot get dust behind them and they do not rub on your eyelids and make them sore. After wearing them for a while, it also enabled me to wear the corneals again so I would swap between the two - gave my eyes a rest after 20 years! Sclerals do look a bit scary when you first see them as they cover the whole eye but you soon get used to this so do not be put off by it. Sounds like these would definitely be worth investigating - with KC it seems that everyone needs to try all the options before finding the one that works for them - however this needs patience as unfortunately it can take a long time! Please ask your hospital about sclerals. There is info about sclerals on the KC Group website - http://www.keratoconus-group.org.uk but if you have any further questions then please email me on sue.ingram@virgin.net. Sclerals can also sometimes avoid the need for a graft so are definitely worth a try.
With regard to driving, I have had KC for 25 years and have been driving for 23 years - I was checked yesterday and my vision with lenses is still fine for driving. I know this will be different for everyone but as long as your vision with lenses is good enough (once you have got these sorted), then hopefully you should be OK.
Vision varies from person to person with KC but most people find a solution which enables them to continue with their daily life - this can take alot of time and you definitely need a practitioner who is patient enough to do lots of fittings and ensure that your lenses are correct for you; but don't give up, you will get there in the end.
KC is something we have to live with and at the end of the day, its all about managing it - unfortunately, it is not going to go away (I wish!). I do hope you get your lenses sorted soon - we have all been there and understand exactly how you feel (and the rest of the world definitely doesn't!) but eventually it will sort itself out for you. Do let us know how you get on. Good luck and have a good Christmas. Keep smiling :-) SUE
As you are having so many problems with wearing time of rgp corneals, have you thought of trying scleral lenses? I had worn corneals for 20-odd years before my eyes decided enough was enough and I just could not keep them in, but of course I could not function without them in - catch 22! After about a year of pure hell, sclerals were suggested and they are great - 100% more comfortable then corneals, no contact on the cornea (therefore no adhesions), cannot fall out, cannot get dust behind them and they do not rub on your eyelids and make them sore. After wearing them for a while, it also enabled me to wear the corneals again so I would swap between the two - gave my eyes a rest after 20 years! Sclerals do look a bit scary when you first see them as they cover the whole eye but you soon get used to this so do not be put off by it. Sounds like these would definitely be worth investigating - with KC it seems that everyone needs to try all the options before finding the one that works for them - however this needs patience as unfortunately it can take a long time! Please ask your hospital about sclerals. There is info about sclerals on the KC Group website - http://www.keratoconus-group.org.uk but if you have any further questions then please email me on sue.ingram@virgin.net. Sclerals can also sometimes avoid the need for a graft so are definitely worth a try.
With regard to driving, I have had KC for 25 years and have been driving for 23 years - I was checked yesterday and my vision with lenses is still fine for driving. I know this will be different for everyone but as long as your vision with lenses is good enough (once you have got these sorted), then hopefully you should be OK.
Vision varies from person to person with KC but most people find a solution which enables them to continue with their daily life - this can take alot of time and you definitely need a practitioner who is patient enough to do lots of fittings and ensure that your lenses are correct for you; but don't give up, you will get there in the end.
KC is something we have to live with and at the end of the day, its all about managing it - unfortunately, it is not going to go away (I wish!). I do hope you get your lenses sorted soon - we have all been there and understand exactly how you feel (and the rest of the world definitely doesn't!) but eventually it will sort itself out for you. Do let us know how you get on. Good luck and have a good Christmas. Keep smiling :-) SUE
-
Sue Ingram
Dear Barinder (1229), Welcome to the site. Sorry to hear that you have recently been diagnosed with KC but we are a very jolly club! Unfortunately, KC usually does mean that your eyesight will deteriorate over time as the cornea becomes more conical. Nobody can predict how quick or slow this can be so best not to worry about something which is completely out of your control, but look at the present and are you managing to cope with your daily life and wearing contact lenses? And if not, what can you do about it?
Ultimately, a corneal transplant is possible, however, I have had KC for over 25 years and have managed to stay off the operating table so far! The main method of managing KC is by using contact lenses - either rgp corneal or scleral lenses.
There is hope - there are many of us out there living completely normal lives and not letting KC get in the way of doing so. It can take some time to find the right solution for you and you will find that you have blips over the years - bad eye days or even bad eye months but you will soon learn to take these in your stride. The key thing seems to be in finding a practitioner who is expert in fitting contact lenses on KC eyes and one with tons of patience!
Have you visited the KC Group website on http://www.keratoconus-group.org.uk? If not, this should give you some more info on KC.
Good luck and try not to get too despondent - things will sort themselves out for you. Keep us informed of your progress - its wonderful to think that we can now have contact with people all over the world with KC. Take care. SUE
Ultimately, a corneal transplant is possible, however, I have had KC for over 25 years and have managed to stay off the operating table so far! The main method of managing KC is by using contact lenses - either rgp corneal or scleral lenses.
There is hope - there are many of us out there living completely normal lives and not letting KC get in the way of doing so. It can take some time to find the right solution for you and you will find that you have blips over the years - bad eye days or even bad eye months but you will soon learn to take these in your stride. The key thing seems to be in finding a practitioner who is expert in fitting contact lenses on KC eyes and one with tons of patience!
Have you visited the KC Group website on http://www.keratoconus-group.org.uk? If not, this should give you some more info on KC.
Good luck and try not to get too despondent - things will sort themselves out for you. Keep us informed of your progress - its wonderful to think that we can now have contact with people all over the world with KC. Take care. SUE
-
harpomatrix@yahoo.co.uk
Hi
Just had my appointment with the eye doc. Not good news for me really. He said that the hydrops had not improved. He also said normal conditions of hydrops takes about 2-3months to clear. He said mine though was a severe case of hydrops and would take longer. Something like a large part of my cornea is affected.
I then overheard him talking to a collegue and he said "so what should we do now>" This doc I have is like the best doc and is very well known. They talked for a bit and it sounded pretty serious.
I guess they don't want to panic me just yet si they said come back in 4 weeks and we will see how it is.
I've been put on lotads of drops cause of my infection prob too. Here's my drops and how often I have to take them:
Dexomethason (Maxidex) - Right Eye - 4 Times a Day
Sodium Chrloide (NaCL) - Right Eye - 4 Times a Day
Cycloporin - Both Eyes - 2 Times a Day
Nedocromil (Rapitil) - Both Eyes - 2 Times a Day
Don't know how i'm gonna keep up with that with that.
Just frightened about how long it will take for the hydrops to clear. Things are lookin worse now than they did yesterday.
Just had my appointment with the eye doc. Not good news for me really. He said that the hydrops had not improved. He also said normal conditions of hydrops takes about 2-3months to clear. He said mine though was a severe case of hydrops and would take longer. Something like a large part of my cornea is affected.
I then overheard him talking to a collegue and he said "so what should we do now>" This doc I have is like the best doc and is very well known. They talked for a bit and it sounded pretty serious.
I guess they don't want to panic me just yet si they said come back in 4 weeks and we will see how it is.
I've been put on lotads of drops cause of my infection prob too. Here's my drops and how often I have to take them:
Dexomethason (Maxidex) - Right Eye - 4 Times a Day
Sodium Chrloide (NaCL) - Right Eye - 4 Times a Day
Cycloporin - Both Eyes - 2 Times a Day
Nedocromil (Rapitil) - Both Eyes - 2 Times a Day
Don't know how i'm gonna keep up with that with that.
Just frightened about how long it will take for the hydrops to clear. Things are lookin worse now than they did yesterday.
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