Quicktopic posts: Aug 2001

[Emma]

Hi

I have just been diagnosed as having keractonus today. They had suspected it but have only just the new machine in recently. Anyway the specialist has said that I must go to get contacts fitted, but he seems to think that I can get soft ones?! From what I have read, I thought you had to wear hard ones? Now I am confused.
Also I was wondering if anyone could tell me how quickly it normally progresses. I'm 19. He says it is much worse in my left eye, but now I'm worried about how quickly it will get worse if I will have to stop driving etc etc. I sound awful getting all worried when I can see from looking at others messages that mine is nothing compared to what you all have to put up with! But I could still do with some advice.... my email is emmafletch@yahoo.co.uk

Thanks
Emma

[pp carole Morgan]

Deleted by author 14-08-2001 02:39 AM

[Tony Stigle ( web person)]

Hi folks..
As you might of seen I have started a webring.. That's a flashy way of linking sites with a common theme together.. I need 3 sites to link with the webring if its to survive.. If any one has some free time to visit ,and then invite, other sites to join it would be worthwhile...
Don't forget I need help with the Glossary, so, those that put a message on this page and use initials form RPG to KCH etc spare a though to new visitors who might want some help with keracotospeak!.. I'm only the web writer and don't know these terms my self so.. E.mail me.. (tonystigle@yahoo.com) and Ill put it in the list..
and also.... If you put your e-mail address on the discussion page let me know if you want to go on to the "Contact Local Members" list...
We get an average of 17 visitors a day now. Well done... you all... Delighted to be involved If you have any ideas for developing this site let me know..
Have you found the live chat page useful? or is it a waste of space?.. Feed back please
Finally
Ken Pullum needs a lap top to help him with recording data on KC.. Anybody in the know?.. he needs an old 486 (preferably with a CD ) .. nothing to grand I'm sure some one must know some one! .All the best to you all. Tony

[Robert Smith]

Dear Emma
Sorry to hear that you have KC but at least there is support now. I was diagnosed with KC when I was 20 or so (I have really forgotten). I went through all the known (at that time) lenses which were all total hell! I eventually gave up on them. I only have it seriously in my left eye so I have been really lucky and have been able to drive and lead a normal life relying on glasses - the only thing I couldn't do was play cricket, or any ball games come to that!
At the age of 47 the KC in my left eye is now so bad that vision is pretty useless while it has spread slightly to my right. I have just, in May, agreed to a cornea transplant which I await with a lot of fear and trepidation!
Until I found this site I had never had contact with anybody who had it - you are in a much better position to get help and advice.
Hope this helps at least a small bit - keep in touch with the group.
Best wishes
Robert

[Kristian Tizzard]

Emma,
I had KC diagnosed nearly 10 years ago when I was 18. I didn't really understand the disease as I didn't really have any contact witha ny other sufferers. This website has actually been very helpful as it gives a good picture of the ways in which KC is experienced by various people. My KC was also worse in my left eye and I had a graft when I was 19. It went really well and have never looked back. The main thing that I would say is that you should be assertive about what you need from the clinic you attend. I find that because KC cannot be seen, that some how people find it hard to recognise how it affects you. There are lots of successful treatments available and you shouldn't be shy about asking about them!! Good Luck!

[sarah1]

My Mum, Dianne has had Keratoconus for over 18 years. She does not have access to the Internet as yet and so I have printed out the pages from the discussion group for her. She has read all the pages, but has just one problem. She wears one scleral lens and one RGP. She is having trouble keeping her goldfish in her scleral or using it as a Barbie soup bowl as hers has air holes in! We are glad that everyone is keeping their sense of humour!

[June]

Emma: firstly, don't panic! I was 17 when i knew somthing was wrong but not until 21 was KC actually diagnosed. Sometimes it progresses quickly othertimes seems to platau for years. As you can tell from the pages lens wear is the biggest challenge and you need a very good and experienced fitter, very supportive friends and of course a sense of humour!!! Where do you go for checkups? do they know of the group?

[Sue Ingram]

Hi Tony, There is a possibility that I MAY be able to get an old laptop from work for Ken. I work for a charity and we are usually begging, stealing and borrowing for others but on this occasion might be able to help. I will email Ken direct and let him know. Will let you know whether or not it transpires just in case someone else can help. SUE