Quicktopic posts: Feb 2002

[Catherine (Peterborough)]

Eleanor,
Thanks for the tip on double vision - this has been worse since I've started wearing a scleral lens in one eye, so I will discuss next time I'm at Moorfields. I thought my eyes seemed to be fighting each other!

[Tony Stigle]

Just a few things... Thanks to those who contribute to these pages and also to the web site.. I have updated the Locals page... Please check your details and insure that we have the current E. mail address for you... some I know are no longer current.. Why not send an Email to some one that is local to you?... then report to me any returned E.mails (address not known) to me! Otherwise I will send an awful joke to every one.... Its a threat!
We have had record hits with 109 hits in 2 days!.... The average now being just over 24 a day..
And just a reminder that although it is possible to contribute to the discussion page by E.mail only.. We request that you go via the web site to catch any news & listed information that could help you http://www.keratoconus-group.org.uk
Thanks... Tony Stigle Web person

[Jacqueline Cheetham]

A message for Mike Oliver, could I have more details of the Thames Path Walk. Would it be possible to do part of it, how do I go about finding how I can join in with this? I would love to be able to walk it all. But I'm a bit worried that I wouldn't be able to manage it. Mind you I have time to practice... Thanks.

[Bob Hillcock (PORTSMOUTH)]

Hi Everyone
This is my first visit to this site and in fact my first visit to any site concerning KC.
I was diagnosed around 1995 and my condition has steadily got worse.I wear rgp lens prescribed by a consultant at my local hospital I have had numerous problems regarding lens and comfort etc and would welcome any comments from anyone outthere.I have just had a check up and was told to change my ways re cleaning procedures etc and I have realized that I will have to make a big effort,hence visiting web sites to try and gain more information.No one has ever mentioned for example that there is surgery available for more severe cases.I would like to hear from anyone that has had surgery. Regards BOB.

[Caroline Dyer]

Genetic Link with KC
I have had KC for about 6 years and my Aunty has recently discovered that she has it too. We are willing to be part of the research project discussed on the website but were not quite sure how to register our interest. Have mentioned this to Tony Stigle, (thank you for the e mail) in case there was anybody else in the same position as maybe if there was a place to register on the site or to a link at Moorefields then hopefully it may find the required numbers to begin the study which I am sure would be useful to us all.

[John Smith]

Bob,

There are quite a few of us on this site who've had surgery - I had a corneal graft about 3 weeks ago. If you (or anyone else) want to chat, you can get me on john@roundel.net

John

[Andrew Hill]

I am new to this site, and until I got the wab site address from the wall of the clinic at Leicester Royal Infirmary I never new it existed.

I have had KC for about 20 years, my right eye has had a graft about ten years ago. (when I was 27)

I had a graft because I was losing lenses constantly, tried "piggy back" and diferent presciptions many time.

I am not sure if I am glad I had the graft, due to poor vision after the op and I still have to wear lenses but I don't lose that many lenses since.

For those that ask about the operation, my experience was very fraught, I was young and had a job that demanded good eye sight. I had to leave that job, sell my house and live off the government whilst I recovered. I have not suffered any rejection to the graft and I suppose, not including the eye sight after the op, the op was a success.

I would not recommend a graft on my experience but, I have read about the operation precedure - ten years on - and it sounds aas though things have moved on. Lets hope because my left eye is getting worse and I may need another graft.

KC gets me down so much sometimes, I have a young family and without my lenses I am partially blind - they have tried prescribing glasses but the vision is not great and I feel as if I am looking the wrong way down a pair of binoculars when I have them on.

I worry about wearing lenses all the time (upto 16hrs a day) but I have no choice, the specialists tell me to cut down the wearing time.

What causes KC ? I used to swim alot when I was younger and I question the amount of chloride in the water, could this cause KC ?

[Bob Hillcock (PORTSMOUTH)]

ANDREW
I can fully appreciate what you have been through and hope if you do have to have another op that due to advances in technology that it would be more successful.
I to have problems with lenses,losing them or too busy to do the proper cleansing routine which is why I too would consider the op..if indeed I have a choice.
I don't think there is a specific cause of KC,more likely just an hereditry thing.(I've never been a great swimming goer so I'am not sure about that theory!!!
If you want a chat drop me a line on rhillcock@lineone.net

[Jacqueline Cheetham]

ANDREW. The comment you made about swimming a lot has made me really think. I have also been and still am, a very keen swimmer. As a youngster I would come home with my eyes red and streaming due to the chloride. It would be interesting to hear if anyone else had this problem.

[Catherine (Peterborough)]

I've never been a swimmer - until now - I have a scleral lens, can therefore see while in the pool, and have the lens protecting my eye from the chlorine!
I was told by my optician that there had been a link made between KC and being atopic - the congenital condition that leads to allergies, eczema, asthma and rhinitus - which I definitely am.
I don't have any other known history of KC in the family, but when I was worried about my nephew's future Prof Buckley at Moorfields told me that being atopic is quite common (can't remember stats) but KC only affects about 1 in 10,000 of the population.
I get the impression from this group though that a lot of us develop it in late teens, with things getting worse around the 30 point - makes a change from mid-life crisis I suppose! I think I was about 19 when mine started, although it wasn't properly diagnosed until much later.