Quicktopic posts: May 2001

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

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Postby elaine » Thu 17 May 2001 11:03 am

i would be quite happy to join you in the chat room but have no computer at home.even if i did the technology would beat me,i had enough trouble clicking on the right orange box! which area are you in? are you another of ken's victims (sorry ken!).
today i videoed a day in the life of a reception class only to be told on playing back that the entire film was taken with the special blurred vision effect. How was i to know that it looked fine to me!I wonder if anyone konws if there is such a thing as sympathy glasses you can give sighted people to show exactly your level of vision and can we have a campaign to ban blackboard-on-the-wall menus! does anyone else have this trouble?!

Carole Woodruff

Postby Carole Woodruff » Thu 17 May 2001 11:27 am


I was interested in reading your message from 15th. You say you can't have your grafts re-done. This I don't understand. I had a graft on my left eye in 1992 and have just had it re-done in December 2000 at Stoke Mandeville hosp in Aylesbury. Second time round the vision is already better unaided although very blurred. The sutures will hopefully be removed before the end of the year (last time they were in 15 months). I am functioning with my right keratoconic eye compensating the lack of vision in the left one. I wear a very uncomfortable RGP lens in this eye but without it wouldn't be able to drive or function.

Has anyone tried the US web links? I read a couple of "transplant diaries". One site even has a video link of the guy's surgery and graphic photos!! The insight the American's have compared to us is amazing. It's only now since becoming familiar with this group that I am learning so much.

Mike Oliver

Postby Mike Oliver » Thu 17 May 2001 12:10 pm

I hope to be at the picnic on Sunday. Hope to see some of you there.

Nicola Thomas

Postby Nicola Thomas » Thu 17 May 2001 12:13 pm

Unfortunately I have to be somewhere else this weekend so cant make it... hope the weather improves by Sunday!


Postby Alex » Thu 17 May 2001 2:01 pm

Sorry mate. Can't make it. Hope the weather works for you
- and not too much hay-fever I hope!!


Kim R.

Postby Kim R. » Thu 17 May 2001 6:01 pm

The operation sounds amazing, glad to hear that it is a success. I'm begining to realise that I know so little about KC and all the different options available.

I've just read some old messages and notice that your optometrist will be trying the Keratoconic soft lenses. Have you tried them yet?

Ken Pullum

Postby Ken Pullum » Fri 18 May 2001 3:46 am

I was just wondering where you put your goldfish when you wear your lenses?

Kate Love

Postby Kate Love » Fri 18 May 2001 1:55 pm

that sounds great, I look forward to hearing when we can meet in Canterbury for coffee. I agree with the banning of blackboard menus! Yuo can get "sympathy glasses" for sighted people, I worked in a school with a unit for blind/visually impaired children As one of our training sessions we had to try and "function" wearing various different effect glasses, personally I found the pin hole glasses wonderful in terms of clarity!!
You can always e-nmail me directly on kate@frampton21.fsnet.co.uk

Kate Love

Postby Kate Love » Fri 18 May 2001 2:01 pm

Yuo have just given me a very silly idea...we should compile a list entitled "ALTERNATIVE USES FOR A SCLERAL LENS" Personally, I use mine for serving dips at parties, but the kids at school think it would make a good Barbie doll dish!! I have been given various other suggestions, but I don't think they should be published before 9pm!!!

Still not sure about the picnic, but I will endeavour to be there.

Sue Ingram

Postby Sue Ingram » Fri 18 May 2001 4:56 pm

Dear Scott, I wear both RGP corneals and scleral lenses, both separately and together! I suffer alot with the mucus problem. In fact, it is a real pain - generally, I have no other problems with lenses but the mucus can make them very very difficult to wear. I have found that Miraflow cleaner seems to work well with the scleral lenses - it seems to be more gentle so it might be worth giving it a go.

Whiteduck - Ken and I have also recently been wondering how we can get the word out about the KC website and the option of scleral lenses for KC sufferers. Perhaps the posters at MEH should be bigger and in colour and perhaps they can also be distributed to other hospitals and opticians who deal with KC. As Mike says, there are many things that are already being done but perhaps we could all help and come up with some new ideas to spread the word. I also agree with you re encouraging optometrists/professionals to visit the website and to add comments/advice to the discussion page - its good to know they are out there listening.

Freddy - keep up the good work. Its encouraging to hear your progress.


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