Quicktopic posts: Mar 2002

General forum for the UK Keratoconus and self-help group members.

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

Lorraine-Chester

Postby Lorraine-Chester » Wed 20 Mar 2002 5:36 pm

I am 39 and have KC since 13yrs old. A year ago I had a graft on my right eye at Chester. I went through rejection in the Summer but the graft is ok now. I have very poor vision with it (unable to see chart) and am hoping that when
I have half stiches removed next month maybe the sight will improve. Nazier's experience of having stiches removed every 3/4 months is different to me. I am also having problems with my left eye due to dryness and am therefore having to leave my lens out a lot. Life can be quite difficult especially when I have 4 children to look after!
Nevertheless, I can only remain optimistic!

Cone Eyes

Postby Cone Eyes » Thu 21 Mar 2002 12:53 pm

Amanda, I had near hydrops, certainly an edema at xmas, it took 6 weeks before i wore a lens in that eye again, although i am on limited wear time, have been for somtime, both eyes. The averrsion to bright light was v painfull, particually with the bright sunshine and snow on the ground, not a pleasant situationat the best of times.

Lorraine, what type of graft did you have, what caused the rejection, did you have a nother op.

Ady, are you seeing a specialist at hospital, if not get an appointment asap, you will wait a minimum of 3 months for your first appointment.

I am going to see an surgeon on monday, has anyone any questions to ask? This is your last chance!

Amanda Stigle

Postby Amanda Stigle » Tue 26 Mar 2002 5:32 pm

cone eyes

Amanda Stigle

Postby Amanda Stigle » Tue 26 Mar 2002 5:37 pm

I think it may be a good idea to discuss this further, please e-mai me at "astigle@aol.com"
Lorraine you are welcome to do the same.

andy

Postby andy » Tue 26 Mar 2002 6:59 pm

Can anyone tell me the difference between a DALK and DLK graft /

Thanks
Andy

Emma Reilly

Postby Emma Reilly » Wed 27 Mar 2002 8:49 am

I have been living with keratoconus for 2 years now and have found that the hard lenses are an absolute terror to wear. Has anyone else had this problem? I have also been told that I am not eligable for a cornea transplant until I am 18. Is there anyone outthere that can give me some more details on this disease and on what I can do to improve my lifestyle. At the moment I feel its unbearable.

Mohammed

Postby Mohammed » Wed 27 Mar 2002 11:13 am

Hello my name is Mohammed I live in West Yorkshire and I've recently been diagnosed with having KC. I am 23 years old I noticed when I was about 20, that my eyes were weakening and initally I thought I needed glasses. I avoided going to the opticians for about 2 years in which time I realised my eyes were getting worse (I was hoping that this may only be temporary and I was hoping it might go away). finally i was diagnosed as having KC.

my doctor told me that my eyes will never get better and will continue to deteriorate, which may mean i will have to have a transplant. this is what concerns me the most. How successful are this transplants and do you still have to wear contact lenses after the operation or do you gain perfect vision after the operation.

This is very scary for as I have never had problems with my eyes before and none of my family and relatives have this disease.

Stigle

Postby Stigle » Wed 27 Mar 2002 12:10 pm

Emma Reilly
I take it that you found this QuickTopic web without going through the groups website at http://www.keratoconus-group.org.uk.. lots of info there for you..
Tony Stigle (Web site person...)

Dave Hamblett

Postby Dave Hamblett » Thu 28 Mar 2002 6:59 am

Mohammed,
im 23 and have also been diagnosed with KC in the last few months, i have found the info on this site and message board relly helpful, and it has answered lots of my questions. i wear rgp (rigid gas permeable lenses) which i get on with quite well, and from all accounts on here, you may never even need an op as different lenses can help for a long time before it is needed. if you want to caht sbout it any more my email is davehamblett@hotmail.com and i will try to help if i can. one more quick point does anybody elese suffer from very sore eyes first thing in the morning who wears rgp lenses?? Dave


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>To: davehamblett@hotmail.com
>Subject: Keratoconus
>Date: Wed, 27 Mar 2002 22:59:10 -0600 (CST)
>

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Sue B - Hertfordshire

Postby Sue B - Hertfordshire » Thu 28 Mar 2002 9:07 am

Dave,
I often have very sore eyes of a morning and seem to be more sensitive to light first thing. I usually do not attempt to put my lenses in until I have been up for at least an hour. This seems to help. It can be a pain though if you have things to do and can't see. I have never found an answer to it - apart from adjusting my lifestyle to meet my eye limitations. Everyone that knows me accepts that I am 'partially sighted' for the first hour of each day. If you make sure that you leave everything (especially your lenses, solutions etc)in the same place every night before you go to bed, you can usually cope lens-less for a while first thing.
Mohammed,
I was diagnosed when I was 17 and told I would probably need a transplant by the time I was 30. I was horrified, but 26 years later I am still coping with contact lenses. My advice is just take each day as it comes. You can't do anything about the condition apart from accepting that you have it and realising that there are many people in worse situations. Try to be positive and don't let it get you down. Its not all bad. Most of us manage to live "normal" lives despite the KC.


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