Hi Eamonn, Try and hang on in there! Sounds like you are having your fair share of 'bad eye days' at the moment. I used to experience exactly the same as you - trying to put in my corneal lenses each morning was just a nightmare because of the pain and soreness. This is thankfully a thing of the past now I have sclerals.
However, at least you have taken steps to try and look into alternatives. By the way, if an optometrist tells you that sclerals won't work, then do not take his word for it until you have actually tried them. If he won't help you, keep looking until you find someone that will. As you say, they do not know what you have to go through everyday and they cannot see out of your eyes.
Sclerals are a bit more specialised than corneals and you will find that there are not many opticians who deal with them. There is more time involved in fitting them and learning how to insert them, and obviously unless one NEEDED sclerals, then there is no need to have them with all the soft and disposable lenses etc that are around these days - so we are in the minority.
If you can get referred to an eye hospital you might have more luck, and the lenses will also be much cheaper on the NHS. The only problem with this is that it takes a long time and you need a solution now.
I hope you manage to sort something out soon - we have all been there and know what you are going through; moan as much as you like! Take care and let us know your progress. SUE
Quicktopic posts: Mar 2003
Moderators: Anne Klepacz, John Smith, Sweet
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originlcleopatra2
Message 1560 Hi Eamon exactly what is the problem with your SCs/eyes. Pls give me the original message number. Yes we have bad days and REALLY bad days. I have had them for 3years and am now piggy backing.I find that I must give my eyes 6 hours (minumum) 8hours(better) rest ie no lens wearing (night time)or my eyes are dry and become bloodshot and I end up at Moorfields A&E with an eye infection but this only happens when I dont have the break so it is my fault. Although the consultants say it is not necessary every two months or when they feel really dry (lenses)or uncomfortable to wear I use the amiclair(?) protein tablets. When I first got my lenses I had a scratch on my eye that I was not aware of and started to get white lines on the lens I later found out this was a protein build up but if you dont know all part of the learning curve. Strict hygiene goes without saying but I have said it. And I know some think this is stupid but washing your eyes and eyelashes (I use Bodycare Teatree oil Face wash) has helped me alot, think about it your eyes sit in salt water all day. Hope this helps somewhat as this has been my experience the first six months were hard as no-one can really advise you as everyone is unique. I use Soya products as a substitue to dairy and went mad on this Vanilla desert for about a month but find that I cant (or at least minimise my intake) as I started to get mucus in my eyes (which I have never had) it did not smell or eyes itch and hearing other KCs problem with dairy problems stopped and the mucus has gone away. I do find, maybe coincidence that I am becoming (I am 40) what I eat as I have developed intolerances to yeast and if I eat yeast bread (I love Pitta bread) then my eyes become very dry and I get other side effects which I will not publish on the net so really do look at what you eat, have to go now. Hope this has helped, as I say taken me nearly three years to get to this stage but I can wear the sclerals for over 12hours now, it sounds alot but my time wearing with the lenses has improved and therefore my quality of life....if I 'behave' :-)
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tactical@umbilical.demon.
Dear Eamonn - sorry you're feeling so down.
To answer your question: yes, ordinary opticians can and do deal with scleral lenses. In fact, I was first fitted with them at
an opticians who did the fitting for the hospital under some
sort of contract. But they are a specialist area, so you may
find it hard to find one with the necessary expertise.
A thought for the group: I wonder if one think the group might
like to think of would be to start a register of opticians who
do sclerals? - or, indeed, a register of opticians who are
experienced in fitting people with KC, stating whether they
offer corneal, scleral, piggyback or whatever lenses? Clearly,
the group couldn't endorse the quality of any name on the list
nor make particular recommendations, but a list of known
"possibles" might be a great help.
Another thought, for Eamonn and anyone else bothered with lens
tolerance: have you tried wearing one at a time? I know it
makes the world very odd, and no doubt if it gives you the
tendency to walk round with one eye shut it might look rather
odd! But if you tried for a week, say, wearing one the first
day, then the other the second, each eye would be getting that
much more rest for a while, and you could still do more than you could without either.
NOTE: do *not* try to drive like this - you can't judge
distances very well and it could be *very* dangerous. Been
there done that.... once only, fortunately in a driving school
car with dual controls; never again!!
Rosemary
--
Rosemary F. Johnson
Listening in on Hal5/Juno speech equipment
To answer your question: yes, ordinary opticians can and do deal with scleral lenses. In fact, I was first fitted with them at
an opticians who did the fitting for the hospital under some
sort of contract. But they are a specialist area, so you may
find it hard to find one with the necessary expertise.
A thought for the group: I wonder if one think the group might
like to think of would be to start a register of opticians who
do sclerals? - or, indeed, a register of opticians who are
experienced in fitting people with KC, stating whether they
offer corneal, scleral, piggyback or whatever lenses? Clearly,
the group couldn't endorse the quality of any name on the list
nor make particular recommendations, but a list of known
"possibles" might be a great help.
Another thought, for Eamonn and anyone else bothered with lens
tolerance: have you tried wearing one at a time? I know it
makes the world very odd, and no doubt if it gives you the
tendency to walk round with one eye shut it might look rather
odd! But if you tried for a week, say, wearing one the first
day, then the other the second, each eye would be getting that
much more rest for a while, and you could still do more than you could without either.
NOTE: do *not* try to drive like this - you can't judge
distances very well and it could be *very* dangerous. Been
there done that.... once only, fortunately in a driving school
car with dual controls; never again!!
Rosemary
--
Rosemary F. Johnson
Listening in on Hal5/Juno speech equipment
-
tactical@umbilical.demon.
Sue writes:
I have also taken part in the study for contact
lenses for KC. You are right, it was extremely interesting. If anyone else is thinking of participating, it is definitely
worthwhile giving up some of your time to take part - this is
exactly the sort of research we need to try and help with KC. (I also had my cornea mapped for the first time ever).
Who is doing this, Sue, and how would one go about volunteering?
Rosemary
--
Rosemary F. Johnson
Listening in on Hal5/Juno speech equipment
I have also taken part in the study for contact
lenses for KC. You are right, it was extremely interesting. If anyone else is thinking of participating, it is definitely
worthwhile giving up some of your time to take part - this is
exactly the sort of research we need to try and help with KC. (I also had my cornea mapped for the first time ever).
Who is doing this, Sue, and how would one go about volunteering?
Rosemary
--
Rosemary F. Johnson
Listening in on Hal5/Juno speech equipment
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Sue Ingram
Hi Rosemary, You can find out about this research project from the KC Group website on the following page http://www.keratoconus-group.org.uk/kcstudy.htm. I am assuming that they still require volunteers as Andrew only went last week. SUE
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eamonngillespie GILLESPIE
Hi andrew,
i will keep you updated with what happnes next. Thanks for replying. I hope the both of our conditions do improve in the near future, it's hard not knowing how your eyes are going to react from one day to the next. I was even planning a teaching course in Liverpool Hope...but i don't know how i am going to carry it off if i do get accepted (it's in computers). Do you work yourself are you still at school ?
Eamonn
>From: QT - Andrew MacLean <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic 6-A46Jzt4sJAXLTWnJNHsx
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: 28 Mar 2003 11:37:42 -0000
>
_________________________________________________________________ < replied-to message removed by QT >
i will keep you updated with what happnes next. Thanks for replying. I hope the both of our conditions do improve in the near future, it's hard not knowing how your eyes are going to react from one day to the next. I was even planning a teaching course in Liverpool Hope...but i don't know how i am going to carry it off if i do get accepted (it's in computers). Do you work yourself are you still at school ?
Eamonn
>From: QT - Andrew MacLean <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic 6-A46Jzt4sJAXLTWnJNHsx
><qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: 28 Mar 2003 11:37:42 -0000
>
_________________________________________________________________ < replied-to message removed by QT >
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Andrew Bosanquet
Rosemary F. Johnson said: 'Another thought, for Eamonn and anyone else bothered with lens tolerance: have you tried wearing one at a time?'
I would underline this. I have functioned on one lens (one eyed) for months at a time. Usually with a lens in my right (good) eye, but sometimes with one in my left. In the day I can drive fine like this (but my right eye gives me almost good enough sight to drive with without a lens or glasses). I have done this often to give the other eye a rest for a couple of days, then the rested eye can cope with a lens again 'just like new'. Now without a left lens, when my right eye gives out, I am a bit stuck sometimes! Have to take it out at work and put it back just for the drive home.
Andrew Bosanquet
I would underline this. I have functioned on one lens (one eyed) for months at a time. Usually with a lens in my right (good) eye, but sometimes with one in my left. In the day I can drive fine like this (but my right eye gives me almost good enough sight to drive with without a lens or glasses). I have done this often to give the other eye a rest for a couple of days, then the rested eye can cope with a lens again 'just like new'. Now without a left lens, when my right eye gives out, I am a bit stuck sometimes! Have to take it out at work and put it back just for the drive home.
Andrew Bosanquet
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Andrew Bosanquet
Sue said: You can find out about this research project from the KC Group website on the following page http://www.keratoconus-group.org.uk/kcstudy.htm. I am assuming that they still require volunteers as Andrew only went last week.
This is correct – they need at least 20 more keratoconus patients to complete the study and hope to do so by next Spring. The sooner they finish the project the sooner they can start asking manufactures to make the sophisticated lenses. Marine Gobbe can be contacted on tel: 0207 932 9494
Andrew Bosanquet
This is correct – they need at least 20 more keratoconus patients to complete the study and hope to do so by next Spring. The sooner they finish the project the sooner they can start asking manufactures to make the sophisticated lenses. Marine Gobbe can be contacted on tel: 0207 932 9494
Andrew Bosanquet
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Eamonn
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