Hi Emma
My e-mail's to you have all returned. Not sure why!
Could you try e-mailing me again. Thankyou.
Quicktopic posts: Mar 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Jay
Has anyone got any further info on this procedure?
Seems a way forward and also postpones transplants
http://www.ferrararing.com.br/ing/index2.htm
Seems a way forward and also postpones transplants
http://www.ferrararing.com.br/ing/index2.htm
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Catherine (Peterborough)
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Jay
Catherine
I know exactly how you feel.....but just a thought
Some weeks ago I was walking through Moorefields and noticed this women who had no vision what so ever. I over heard her conversation with a friend about how she copes with it and she hasnt been able to see since a young age and that she has had around 7 eye operations in the process.
It just put it all in perspective. With KC, at least we dont go blind....well not usualy.....its the focusing that gets worse but the eye itself usualy stays healthy if you know what I mean....and I guess some vision , albeit distorted, is better then none
:-)
I know exactly how you feel.....but just a thought
Some weeks ago I was walking through Moorefields and noticed this women who had no vision what so ever. I over heard her conversation with a friend about how she copes with it and she hasnt been able to see since a young age and that she has had around 7 eye operations in the process.
It just put it all in perspective. With KC, at least we dont go blind....well not usualy.....its the focusing that gets worse but the eye itself usualy stays healthy if you know what I mean....and I guess some vision , albeit distorted, is better then none
:-)
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Sue Ingram
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John Smith
Hi all,
A friend of mine from work also has KC, but to a lesser degree than me. She has eczema on her eyelids, and she finds it increasingly uncomfortable to cope with wearing her RGP contacts - so she doesn't, and tries to get by with glasses.
She's tried softperm lenses, but they weren't a great improvement. Does anyone know whether it may be worth her looking into sclerals? She's not convinced, but then she doesn't have the collective wisdom of this board... only mine! (And since my graft, I'm probably biased!)
John
A friend of mine from work also has KC, but to a lesser degree than me. She has eczema on her eyelids, and she finds it increasingly uncomfortable to cope with wearing her RGP contacts - so she doesn't, and tries to get by with glasses.
She's tried softperm lenses, but they weren't a great improvement. Does anyone know whether it may be worth her looking into sclerals? She's not convinced, but then she doesn't have the collective wisdom of this board... only mine! (And since my graft, I'm probably biased!)
John
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Caroline Dyer
I see from the website that it is the group AGM this Saturday, although unable to attend I just wanted to say THANK YOU to those of you who keep the group and website up, running and continually developing. Also to people such as Ken Pullen who take the time to contribute. Looking forward to any new developments or ideas for the group.
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Janet Manning
Hi John,
I can really sympathise with your friend - I have the same problem of eczema around the eyes. Have been very miserable since Xmas with lens wearing time down to a few hours or nothing. Sclerals uncomfortable most of the time. But I'm now heaps better after Chinese herbal treatment from a brilliant doctor in Oxford. Back to as much as 12 hours a day with scleral lenses now and they're comfortable.
This has been a recurring problem, both pre and post graft and with rgps, soft perms and sclerals. Resorted to hydrocortisone ointment last spring as I had exams and was going abroad, but cannot keep doing that. I now use loads of vasoline at night around my eyes and also put a small amount on during the day AFTER putting the lenses in. If I put it on before, it gets in my eyes in the process of putting the lenses in!
Where do you live? Could your friend get to Oxford? Or maybe she could find a practitioner locally. I could ask my doctor if he knows anyone good in your area.
Janet
I can really sympathise with your friend - I have the same problem of eczema around the eyes. Have been very miserable since Xmas with lens wearing time down to a few hours or nothing. Sclerals uncomfortable most of the time. But I'm now heaps better after Chinese herbal treatment from a brilliant doctor in Oxford. Back to as much as 12 hours a day with scleral lenses now and they're comfortable.
This has been a recurring problem, both pre and post graft and with rgps, soft perms and sclerals. Resorted to hydrocortisone ointment last spring as I had exams and was going abroad, but cannot keep doing that. I now use loads of vasoline at night around my eyes and also put a small amount on during the day AFTER putting the lenses in. If I put it on before, it gets in my eyes in the process of putting the lenses in!
Where do you live? Could your friend get to Oxford? Or maybe she could find a practitioner locally. I could ask my doctor if he knows anyone good in your area.
Janet
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Sue B - Hertfordshire
Hi John,
Like Janet, I can sympathise with your friend. I used to get very severe eczema especially on my face and in particular around my eyes. On two occasions it was so bad that I had to be admitted to hospital. Fortunately, it is now under control and manageable.
I would agree with Janet and recommend vaseline to your friend. I used to spread it on thick every night when I went to bed. It doesn't look good and the bedding will require very frequent washing but it really does help.
Like your friend, I used to revert to glasses because the corneal lenses were impossible whilst the eczema was severe but I then reached a stage where I couldn't see to drive with glasses so had to persevere with the lenses.
I now wear corneal lenses for up to 16 hours a day but I still use vaseline of a night time (only a thin smear is necessary now) to ensure that the eczema is kept in check. Has your friend seen a skin specialist about her eczema? It really is worth it - I was given many useful tips and guidance when my eczema was bad. If your friend would like to discuss anything in more detail, she can e-mail me on sueburbidge@aol.com
Regards,
Sue
Like Janet, I can sympathise with your friend. I used to get very severe eczema especially on my face and in particular around my eyes. On two occasions it was so bad that I had to be admitted to hospital. Fortunately, it is now under control and manageable.
I would agree with Janet and recommend vaseline to your friend. I used to spread it on thick every night when I went to bed. It doesn't look good and the bedding will require very frequent washing but it really does help.
Like your friend, I used to revert to glasses because the corneal lenses were impossible whilst the eczema was severe but I then reached a stage where I couldn't see to drive with glasses so had to persevere with the lenses.
I now wear corneal lenses for up to 16 hours a day but I still use vaseline of a night time (only a thin smear is necessary now) to ensure that the eczema is kept in check. Has your friend seen a skin specialist about her eczema? It really is worth it - I was given many useful tips and guidance when my eczema was bad. If your friend would like to discuss anything in more detail, she can e-mail me on sueburbidge@aol.com
Regards,
Sue
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Dan - Wakefield
Hi all.
I am in the early stages of KC, although i have had it for about four years. Over these years i have been back and forth to the hospital, and i seem to have spent most of my life at the opticians - i imagine that i'm not alone here.
At the moment i am at the stage where soft lenses are becoming inappropriate and i am having to go onto RGP lenses, which i don't find too uncomfortable although not as comfy as the soft ones. What are the alternatives to the RGP lenses? I hear people mention K lenses? How do they differ from RGP lenses? and how much do they cost?
Dan
I am in the early stages of KC, although i have had it for about four years. Over these years i have been back and forth to the hospital, and i seem to have spent most of my life at the opticians - i imagine that i'm not alone here.
At the moment i am at the stage where soft lenses are becoming inappropriate and i am having to go onto RGP lenses, which i don't find too uncomfortable although not as comfy as the soft ones. What are the alternatives to the RGP lenses? I hear people mention K lenses? How do they differ from RGP lenses? and how much do they cost?
Dan
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