Quicktopic posts: Mar 2001

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

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pp Andrew Nicholson

Postby pp Andrew Nicholson » Wed 14 Mar 2001 5:44 am

COPY FROM GUESTBOOK BY Tony Stigle
Name: andrew nicholson (Homepage)
Country: england Date: Fri Mar 2 21:21:39 2001
Comment: I had a transplant at york dist 26/02/01 on my right eye? Joiner by trade what is the best eye protection which is practical and comfortable for work?

Whiteduck

Postby Whiteduck » Sat 17 Mar 2001 6:50 pm

Just like to add a quick message to say a big thanks to the organisers, professionals and KC families that made today's conference possible.

I found this a very useful forum indeed.

Best regards
Ian G

Whiteduck

Postby Whiteduck » Sat 17 Mar 2001 7:15 pm

Just thought it would be interesting to add this theme for you all to comment on or add your own version as you wish.

A Day in the Life of... KC

1. Wake up and get washed/dressed. Wash those hands thoroughly.
2. Carefully remove the streaky white mucus that has formed overnight underneath the lower eyelids before putting in lenses.
3. Insert RGP corneal lenses in both eyes and hope it's not going to be a bad eye day!
4. Travel to work - check I've got that pair of wrap-around sunglasses that are mandatory these days.
5. Get to work and sit down infront of VDU but must remember to keep blinking to get that good tear exchange and comfort.
6. Off to a meeting but the eyes are sore so today I am finding it difficult to maintain eye contact with colleagues - do they notice ? Do the usual quick diagram to explain to those who are intriged.
7. Back to the VDU for some more blinking. Infact if you have a NEC monitor - switch on those health tips which pop up on the screen to remind you to exercise your eyes.
8. Out to lunch and it's a windy one today. Bit of dust under the lenses - ouch... blink blink blink - ah thats better - eventually.
9. Back to the VDU. Air conditioning drying the eyes out a bit today - blink again lots of times. Perhaps worth putting some refresh drops in.
10. Finally got to the end of the day. Red eyes. Now the glare and halos to cope with - lets not go there in this posting - still trying to find a solution for this though.
11. Back home - can't take the lenses out because I wish to prepare food (sharp knives!), then catch up on paperwork & email and relax infront of TV.
12. Time for bed - relief as I remove each lens - great temptation to rub eyes but no this would not be a good idea.
13. Get the three bottles out:

Saline (Green lid)
Total cleaner (White lid)
Total soaking solution (Another white lid - why o why???)

14. Thoroughly wash hands and then do the usual RGP "scrub" between finger and thumb or index finger and palm. Rinse with the green bottle - Saline. Finally store in the case and soak in good old Total. (BTW check out http://www.postoptics.co.uk - much cheaper solutions than highstreet)

15. Sleep and start this all over again tomorrow

Hope this is useful!

Regards
Ian

Whiteduck

Postby Whiteduck » Sat 17 Mar 2001 7:28 pm

A couple of observations from Saturday's extremely useful conference and my own comments:

- Glare was a key word mentioned and I would be happy to be involved in working with the group to find a solution. Unfortunately there was no easy answer available today.

- The need for a National Policy on KC Management as mentioned by Professor Buckley. This has to be key to all KC Patients and any lobbying we can do as a group to get this on the agenda would be excellent.

- I wonder if we can have a clickable map on the website showing the demographics of KC in the UK.

- Ken Pullum's company website is http://www.sclerals.com

You will be glad to hear that this is my last posting of the night (it's now 00:20 on Sunday).

Regards
Ian

Sue Ingram

Postby Sue Ingram » Sun 18 Mar 2001 7:46 am

Dear Ian,

Well, you beat me to it! (take note, Phil and Tony!).

I would also like to say that I found the Conference yesterday excellent and thanks again to all the organisers. Here's looking to the next one! It will be good if some of issues raised can be moved forward.

Your Day In the Life ..... funny, can't think why, but it sounds EXTREMELY familiar! With regard to the mucus problem (I suffer terribly with this), I did use optichom eye drops for years but eventually gave up with that. However, I have found that since I cut dairy products out of my diet about 3 years' ago, the situation has improved. I think wearing the lenses is probably a major cause of the mucus (one of those ironies), however, dairy products seems to aggravate the situation. Milk especially - I used to drink alot - I know use soya milk. You can get soya yoghurt and non-dairy cheese. If I do have a small amount of diary products every now and again this does not seem to be a problem - it seems to be when there is a build-up in the body from eating them every day. I know this may not work for everyone but it might be worth a try.

Continuing on from my theme of yesterday of not letting KC beat you, I would just like to tell you some of the things that it has NOT stopped me doing:-

1) I have always done alot of camping - this means getting used to taking lenses out in the pitch-black with a torch!

2) I do alot of swimming and used to remove my lenses for this, however, as my eyes got worse this was not possible. For years now, I have been swimming with my lenses in, whether it is corneals or sclerals. So far, touch wood, I have not lost one!

3) I went travelling for 16 months which was wonderful. This meant alot of overnight travel; by 'plane, train, coach, bus or boat; putting lenses in and out on all these modes of transport is not alot of fun. Try finding your seat once you have taken them out! A couple of times I lost lenses - I had taken a spare pair as contingency. My Mum replaced one by ordering it from Moorfields and sending it by post to Bangkok! The other I ordered whilst I was in Oz and was amazed that it only took two days!

4) I have been trekking a couple of times in the Jungle in Thailand - I can assure you that there is not a toilet to be seen, let alone a sink with a plug!

5) I have been scuba-diving on the Great Barrier Reef - of course I was told, 'no probs, luv, you can use a prescription mask'. Obviously, not possible for us Keratoconics, so I just wore my lenses - I would say this is one of the most amazing things I have ever experienced in my whole life and I am glad I did not miss it.

6) I now work for a Third-World Development Agency who will insist upon sending me out to countries such as Bolivia, Sudan, Ethiopia, Senegal and Kenya. This is great, but as you can imagine the communities we help are out in the middle of nowhere with only dirt roads for access. Generally these countries tend to be very hot, humid, windy and DUSTY! Not good for contact lens wearers!

The moral of the story, it is possible to do anything with KC - best thing is just to try it and see what happens!

Mike, Colin and I are looking forward to the sponsored walk next year along the Thames Path in aid of KC.

It was great to meet everyone yesterday. Take care and hopefully see or talk to you again soon. SUE

Tony Stigle

Postby Tony Stigle » Sun 18 Mar 2001 11:23 am

Is now 4.00pm Sunday and Mandy and I have not stopped talking about the conference..
What a most wonderful day. I look forward to getting my head around the ideas put to me for the web site.. Its going to take some time but here is a list of developments for the site.

a) An on line live discussion group.. I have spent an hour on line looking for how this might be done.. any help will be well received.

b) An area on the site where medical proficinals can look up KC and find a discripton of it in medical terms and gives advice and considerations if urgent attention is required.. Also help on this one please..sir!

c} The correct pronunciation of KC.. this can be a 'wav' file like this
http://www.stigle.co.uk/name.wav

d) Vote for Phil.. Should Phil Davis run the 2002 London Marathon?
a voting area ..just for a laugh.. & raise some dosh for the group..

e) A form giving details of how to make a donation to funds

f) Photos and report of the conference.. may include full transcript.. be patient for the latter!

g) Expand the members activates area.. Phil has it to him self at the moment!.. now come you lot, info on the Thames walk and the John o groats cycle ride.. ASAP..

h) More and better links ... so Surf that thing! let me know by mail or add them to this area.

i) As comments on this area will expire after 50 entries or so.. I will copy useful comments onto a useful comments page.

j) An area where reports on ideas tried by members to over come those persistent KC problems such as glare and bubbles & things that go green in the night!

k) A page of definitions and words used in KC management.... so what do you need to know? don't be afaid to ask! we are not born knowing it....

Theres more! but keep the ideas coming..

Just to finish a THANK YOU to those who made the conference happen. It was well done.. in fact, faultless.. time went too quickly of course.. Thank you.
Thanks too for the kind words said about this site. At this rate I will be an expert webber by Easter! so thanks to you.

T JAMES

Postby T JAMES » Sun 18 Mar 2001 11:58 am

Firstly thank all for organising and arranging the conference. Very enlightening. I was given an envelope from the RNIB lady and I can not recollect exactly what area of my experiences she wishes me to write about. Anyone else out there could advise me. i would like to help.

Tony Stigle

Postby Tony Stigle » Sun 18 Mar 2001 12:39 pm

Hello T James.. ( Beat you to this one Sue!)
Gill Levy from RNIB is collecting the experiences you have had to pass on to those who work with those who may be less Abled..

Kate Love

Postby Kate Love » Sun 18 Mar 2001 1:39 pm

Yhanks to everyone involved in making yesterday's conference such a success - I've been boring my friends silly about it for the last 24 hours! Is there anyone else in Kent who would be interested in getting together/setting up a group or shall we stick with travelling up to London? It was great to hear all the different views and experiences of other KC sufferers and of those involved with KC. Yet again, agreat big THANK YOU! When can I book my place on the next one??

Tony Stigle

Postby Tony Stigle » Sun 18 Mar 2001 3:48 pm

Elizabeth Mair (From Glasgow) who we met yesterday asked us to put her e.mail address on here for anyone in Scotland to contact her on.. emmair@talk21.com

Also Kate Love.. We are in Kent. ( Chatham ) where are you?
Tony & Mandy Stigle


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