Dear All
I haven't posted for quite a while now - due, in part, to computer problems - ALWAYS keep a back up! Back up and running again
I also had not said anything lately as I have not really felt able to offer anything to the many who seem to be suffering so badly. I had a graft over a year ago and am now wearing glasses and have pretty good sight. I have been so lucky in that only one eye was affected (I still imagine the other one will go one day!) and I have not had any really bad problems. No rejection problems and no real discomfort. My only moan has been that my hosital check ups keep getting put back. I was due for my yearly check last week (only 6 weeks late) but this was put off till April.
In answer to many requests for information about how the condition progresses I was diagnosed at 20, after a slow deterioration my eye was stable for 25 years but then got quite bad over a year or so and I had a graft when I was 47. As I said above the graft has been 100% successful - so far! Even to the extent that I am now able to see the strange 3D puzzle drawings that were so popular some years ago and which were always a complete mystery to me!
I tried the many lens prescriptions (but not scherals) in my 20s but it always felt as though I had most of the Himalayas in my eyes and I eventually gave them up as a bad job - I was lucky though in that my good eye was sufficient to give me satisfactory sight.
I must say that this site has been wonderful over the past year as a source of information and comfort and I am not sure if I would be so confident now without it.
Best wishes to all
Robert
Quicktopic posts: Mar 2003
Moderators: Anne Klepacz, John Smith, Sweet
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Christine
Dear Anthony
Sorry to hear about your visual problems and the effect they're having on your work. A few points that may be of help:
1) The RNIB have a special unit for advice on employment (and education). The RNIB free helpline is 08457 66 99 99. They are there for any one with significant visual problems - not just registered blind. I know they always advise people to seek help before giving up your job - it's much harder if you give up the job first and then seek help.
2) There are many optical magnification aids you can have to enable you to enlarge small things such as you describe. You can have these on loan from the NHS. Most hospital Eye departments have an Low Vision Aid (LVA)department, or can refer you to one. The RNIB website (http://www.rnib.org)has a section for looking up your nearest Low vision service - although it was rather out of date when I last checked it.
3)The only person that can register you partially sighted is a consultant ophthalmologist. The one you've been seeing about your Keratoconus might have enough info in your notes to do it without seeing you again. However, as KC is an uncommon reason for registration, he/she may need some persuading to realise the full extent of your problems - this may be one area where the RNIB advisors could back you up. You may need another visit to the hospital - but if you can sort out an LVA appointment at the same time it would be worth it.
Good luck!
Sorry to hear about your visual problems and the effect they're having on your work. A few points that may be of help:
1) The RNIB have a special unit for advice on employment (and education). The RNIB free helpline is 08457 66 99 99. They are there for any one with significant visual problems - not just registered blind. I know they always advise people to seek help before giving up your job - it's much harder if you give up the job first and then seek help.
2) There are many optical magnification aids you can have to enable you to enlarge small things such as you describe. You can have these on loan from the NHS. Most hospital Eye departments have an Low Vision Aid (LVA)department, or can refer you to one. The RNIB website (http://www.rnib.org)has a section for looking up your nearest Low vision service - although it was rather out of date when I last checked it.
3)The only person that can register you partially sighted is a consultant ophthalmologist. The one you've been seeing about your Keratoconus might have enough info in your notes to do it without seeing you again. However, as KC is an uncommon reason for registration, he/she may need some persuading to realise the full extent of your problems - this may be one area where the RNIB advisors could back you up. You may need another visit to the hospital - but if you can sort out an LVA appointment at the same time it would be worth it.
Good luck!
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Anthony Facer
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Laura
Today I came home with my new rgp lenses. Life seemed much clearer even with the tears!! Can't wait till I can wear them for a lot longer. Although when I got home I did experience a couple of problems. I decided to have a little practise at taking them in and out, however I nearly lost one of my lenses! It got stuck to the top of my eyeball and now i'm a bit worried if it happens again. Can they get stuck so that you can't get them back out?
I know its a stupid question, and i did so well at the opticians, but now im home and I feel stupid!! I know theres a lot of you that are far worse of than me and I shouldn't moan. But I'm a beginner and feel a little phased by it all!!
I know its a stupid question, and i did so well at the opticians, but now im home and I feel stupid!! I know theres a lot of you that are far worse of than me and I shouldn't moan. But I'm a beginner and feel a little phased by it all!!
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mike summers
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Gaynor Thomas
I have been diagnosed with KC for 10 years now and having recently heard of the group my Mum and Dad subscribes.
I have been on the web site once before in work but have just had a new computer for Christmas and now I am up and running on the internet. Having KC I decided to go for a flat screen as I thought this might be better for my eyes but I am finding it harder to read. Has anyone else found this??
Had a new set of lenses on Wednesday as my sight had got worse in my left eye and my lens in the right eye was rubbing but am finding it harder to read so I had better go and rest them now.
I think this discussion page is really good.
Gaynor
I have been on the web site once before in work but have just had a new computer for Christmas and now I am up and running on the internet. Having KC I decided to go for a flat screen as I thought this might be better for my eyes but I am finding it harder to read. Has anyone else found this??
Had a new set of lenses on Wednesday as my sight had got worse in my left eye and my lens in the right eye was rubbing but am finding it harder to read so I had better go and rest them now.
I think this discussion page is really good.
Gaynor
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ally
Is it possible to notice a deterioration suddenly?
I have been having some sharp pain in my left eye(the worst affected by the KC but still reletively mild. My eye was uncomfortable the whole day and I put it down to me trying to wear my lens too long in that eye the previous day. I am trying to build up my wear time, which at the moment is only 5 hours tops. But the next day I woke up and I was finding it difficult to read the paper, normally not too much of a problem and even my computer screen appears a little more blurred than normal.
To make matters worse I was wearing my lens and I noticed it decentre, I got my mirror to try to recentre it again as it was too painful to leave it where it was, and it popped out ON THE BUS!!!!! and it happened a couple of stops before I was due to get off. I wasn't able to find it (well you know how it is) I am so upset, I don't know if I can afford another lens at the moment and when I do eventually get one I will be scared to death to wear it out in future for fear of losing it. Anyway I am going to ring the contact lens clinic tomorrow to see what I can do, but it does make me wonder why they don't provide you with a wear and spare. I have only had my lens four months and never had one before in my life, god help me if this is the sign of things to come as I definately cannot afford to keep replacing lost lenses.
Sorry just venting on the last paragraph.
Take care all,
ally
I have been having some sharp pain in my left eye(the worst affected by the KC but still reletively mild. My eye was uncomfortable the whole day and I put it down to me trying to wear my lens too long in that eye the previous day. I am trying to build up my wear time, which at the moment is only 5 hours tops. But the next day I woke up and I was finding it difficult to read the paper, normally not too much of a problem and even my computer screen appears a little more blurred than normal.
To make matters worse I was wearing my lens and I noticed it decentre, I got my mirror to try to recentre it again as it was too painful to leave it where it was, and it popped out ON THE BUS!!!!! and it happened a couple of stops before I was due to get off. I wasn't able to find it (well you know how it is) I am so upset, I don't know if I can afford another lens at the moment and when I do eventually get one I will be scared to death to wear it out in future for fear of losing it. Anyway I am going to ring the contact lens clinic tomorrow to see what I can do, but it does make me wonder why they don't provide you with a wear and spare. I have only had my lens four months and never had one before in my life, god help me if this is the sign of things to come as I definately cannot afford to keep replacing lost lenses.
Sorry just venting on the last paragraph.
Take care all,
ally
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Nessa
Dear Anthony
Just to let you know, my husband has KC and used to be registered as partially sighted....Now he is registered as blind. so yes it is possible, if you need any help in that area or anyone else for that matter, my email is Ness6521@icqmail.com. He also recieves incapacity benefit and he dosn't have to pay for medication or any Contact lenses.
Dear everyone
By the way hubbys check up last week went fairly well, no signs of rejection, 6 months and counting.........smile.
But now he's on a new medication and his Psoriosis is returning, was told it might go again after being on the new medication for a while.......here's hopeing.
Nessa
Just to let you know, my husband has KC and used to be registered as partially sighted....Now he is registered as blind. so yes it is possible, if you need any help in that area or anyone else for that matter, my email is Ness6521@icqmail.com. He also recieves incapacity benefit and he dosn't have to pay for medication or any Contact lenses.
Dear everyone
By the way hubbys check up last week went fairly well, no signs of rejection, 6 months and counting.........smile.
But now he's on a new medication and his Psoriosis is returning, was told it might go again after being on the new medication for a while.......here's hopeing.
Nessa
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Karen Bashford
I have had KC since age of 18. I am now 32. I find it hard now to drive at night. I nearly knocked someone down who was playing dare. I only saw his feet as he had dark clothes on..I thought it was two chip bags in the road. My husband saw him and I stopped immediately. I won't now drive at night as I don't trust myself anymore. Does anyone else have this problem? I also can't wear my lens in right eye all day as I get pain in it even though it is a new lens.
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