UK Keratoconus Self-Help and Support Association

http://www.keratoconus-group.org.uk/

Welcome... This is the new discussion page.. The Guest book has been discontinued. By subscribing by cliking above & to the left you can recieve an E.mail when you this page is updated... Lets give it a go! Tony

Name: richard (Homepage)
Country: england Date: Thu Jan 25 09:42:09 2001
Comment: My son (18)was diagnosed as suffering from KC over 4 years ago, he has been attending the local hospital clinic. after 4 years of getting contact lenses from boots! (all unsuccsesful&painful).He has at last been referred to moorfields for proper fitting of contact lenses. does anyone have any suggestions on the best types to ask for? will they be as painful as the others? General reassurance needed.

Name: Ian Pearson (Homepage)
Country: uk Date: Tue Jan 16 16:31:11 2001
Comment: I have visited Moorfields Eye Hospital for the last 20 years had a right eye graft in 1990 performed by Miss Ficker.I have had rejection (overcome)when my stiches were removed and surgery to reduce Astigmatism. Things are good my right eye gives full vision with a contact lens and my left eye although not as good as the right has only got slightly worse during the last 20 years.

Name: Stuart (Homepage)
Country: UK Date: Wed Nov 29 17:30:47 2000
Comment: I've just been diagnosed with KC last month and found the URL up at Moorfield Hospital.
Q. With the people who have had KC for a long time, has the condition got worse or has it stayed the same?
The optician I saw couldn't give me a solid answer. I've already got soft lenses for being short sighted, what are these scleral lenses people talk about?

Deleted by topic administrator 05-05-2001 11:15 PM

Dear Tony - I think the new Quick Topic discussion page is excellent - much more useful than the old Guest Book. I have had Keratoconus for at least 25 years (I am 40 this year)and have attended Moorfields for the whole duration. I was finally diagnosed at 15 but believe that KC had probably started mayby 3-4 years' beforehand. I believe everyobdy is slightly different, however, my condition has been a very slow degeneration. I only had KC in my right eye to start with but eventually this became both eyes. Have worn rigid gas permeable corneal lenses, scleral lenses and coated sclerals(with and without soft lenses underneath)- something which Ken Pullum is working on. Scleral lenses are the large lenses which fit over your whole eye; good if you cannot wear RGP corneals or may be needed after a graft, do not fall out and no grit gets behind them, however, sometimes the sight is not as good as RGP corneals. The consultants at Moorfields will recommend what is best for you depending on age, lifestyle, ability to handle the lenses etc, etc. My advice is don't let KC stop you doing anything that you want to do in your life.

Hello Tony, As per Sue's comments the Quick Topic discussion page is a distinct improvement on the old guest book although it served us well. I am having a year's sabbatical from running the London Marathon for the Group, but I am looking forward to seeing as many as possible at our forth coming Conference on the 17th March at the King's Fund. It will make a pleasant change to pounding the streets of London, but then there is always next year or am I in retirement denial?

i think that this new instant discussion page is briliant, i was diagnosed with KC when i was 17, i experianced hydrops in my left eye and had my first transplant 6 mnths afterwards, i first attended my local outpatients department but felt i wasn't getting anywhere so i asked to be refered to another hospital and was sent to moorfields who were excellent, i had my first and second transplant there performed by Mr.Kirkness and Miss.Flicker, unfortunately the second transplant failed and i decided to wait for a while before having another one done, i had my third one done locally, and this i regret as i have had nothing but trouble with it, first i had to go back into hospital 2 days post op as some stitches had erupted and the iris prolapsed, which has left me with a misshapen pupil, then i had 5-6 mnths of rejection and failure, which settled, a year after the transplant i had the running stitch removed(jan this year) and i had a slight episode of rejection last week which has started to settle again, i also have a cataract in this eye due to truama duting the operation and the high doses of steriods i was on to try and combat the rejection. but i am still smiling

I was just reading Justine's message and thought to myself how lucky I have been with my treatment for KC. I was diagnosed in 1992 at the age of 18 and was initially treated with hard gas permeable lenses. My left cornea became too scarred to continue with this treatment in '96 and I had a graft soon afterwards,performed by Mr.Toma at Moorfields, with which I had no problem until the sutres snapped 9 months later causing rejection. This problem was quickly rectified with steriod eye drops and the sutres were removed.To date I have only experienced a couple of minor problems leading to a lens refit on the right, ungrafted eye. I would like to express my admiration for those who seem to plod on with significantly more problems with their treatment than I have had to put up with!

Deleted by topic administrator 05-05-2001 11:15 PM