Quicktopic posts: Dec 2002

[Mike Oliver]

Re KCenter.
Wearing my hat as chair of the KC Group I would like to make the position clear so far as contact between us and KCenter is concerned. They approached Anne by E mail and after consultation with a number of our Committee/trustees she has replied seeking clarification with a view to considering any reasonable suggestions they may have. Obviously everyone welcomes any cooperation which may produce some benefit for those affected by KC. However their initial messages told us very little about what they have in mind and as a registered charity the Group is bound to tread cautiously. Developments will be relayed via this discussion page, the main Group website and newsletter as appropriate. I stress that this Group is a registered charity. That means we have to tread carefully when even considering associating with an organisation which appears commercial in nature. On the other hand, we would be more than happy to do so if after further clarification any concerns were allayed and it furthered our aims and objectives. For the record, we have tried repeatedly to involve someone high profile with KC and those efforts continue. The Group is already involved with leading surgeons and optometrists and has links with at least one lens manufacturer.A Group of our proportions run voluntarily can only function within certain limits and is in any event restricted to the aims and objectives set out in its governing document. We can and do work with others toachieve these and have actively supported research. Sorry this sounds a bit formal but I hope it sets the record straight.

[Kate]

Harpo
I meant to get back to you earlier, but...I won't list my excuses!! I am suffering from a hydrops at themomnet - in my right eye which is my good eye - typucal! I've had mine I am now in week 5 of mine, and I have to say that this last week the pain has eased off and so has the extreme sensitivity to light. The kids at school thought I was really cool in my shades! Apparently my eye is just beginning to look a bit clearer, but the vision is non existent. I have been up to Moorfields twice, and am going back to see Prof Buckley on 23rd December - do you think they will provide mince pies to reward me for fighting my way through the Christmas crowd? Joking apart, the hydrops does get me down, especially as having very little vision in my left eye I am so dependent on other people. anyway, let me know how you are getting on
Kate

[Sue Ingram]

Dear Harpo, I believe our eyes are more light-sensitive with KC, however, wearing corneal contact lenses does not help the situation either. I ALWAYS had to wear sunglasses with my corneal lenses on not just sunny days but on those cloudy but very bright white days, however, with scleral lenses, my eyes are much less light-sensitive and I have realised recently that I do not even think to take my sunglasses out with me these days!

With regard to your eyes watering when you look sideways, I found that I often used to turn my whole head to look sideways, rather than just moving my eyes - this does not dislodge the lens then. Another reason for this was to stop the corneal lenses pinging out! Take care and good luck with the driving. SUE

[Ian]

Mike,

Thanks for your response regarding kcenter.org.

On a different subject is there any reason why we don't publish a link to kcenter in our links section - we have links to two commercial lens manufacturers sites on that page?

On the topic of registered charities have we considered putting the charity no. beneath the logo on the web page and on future correspondence? This would make it easier for people to donate money to the group via Give as You Earn schemes etc.

Additionally could we offer members an opt out scheme on the newsletters as I believe we could save the group some money on postage/printing if we have access to this site ? This could extend to any mailings or brochures that the group kindly produces (such as the conference proceedings) - I am sure many of us would be more than happy to read online or printout ourselves if necessary.

I appreciate as a voluntary organisation it is not always easy to implement some of these ideas.

I have offered assistance in the past on the web site following a request for help shortly after the conference but my ideas (and html code) for a fresh looking site although initially well received were not adopted.

Regards
Ian

[Mikekeratoconus@aol.com]

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[Mike Oliver]

I posted a message earlier today but this appears to have been ever so slightly scrambled by the time it got here so I'll try again.Ian, thanks for suggestions.All printed Group literature already bears the charity number. If it does not appear on this site now then I am sure Tony can organise when next updating things. Gift Aid is one of a number of financial initiatives being considered. Unfortunately we ars currently planning and organising two major projects as well as a number of other things in addition to day to day admin and responding to other issues and queries as they arise. Personally I want to know much more about Kcenter before a link from the group site is considered. In general I do not feel this discussion site is the right forum to deal with Group admin. If you would like to contact me direct my address is Mikekeratoconus@aol.com
If you would like to become more involved then do come to the next committee meeting although this may not be until the new year.

[Simon Wright]

Hi guys. Thanks to Sue for replying to my message re. DLK op. I have some further questions if anyone could please help about the Deep Lamerral Keratoplasty that I am booked to have at MEH on Weds:
1)What is the normal life span of a DLK ?
2)How often do people have MEH appointments post op ? Once a week, once a month...?
3)How can infections be avoided ? Are they common ?
4) How is the left eye affected ?
5) What pain is felt after the operation ?
If anyone has had the DLK, please please could you contact me on siwrightio@hotmail.com, as I am very nervous because this my final year at City University. Thanks.

[harpomatrix@yahoo.co.uk]

Hi everyone

Just an update on what I'm thinking about at the moment and whats gong on really.

Its been 18 days so far. There seems to be still no improvement in the acute hydrops. Maybe its too soon but its bothering me. I though at least some vision would come back or at least the whiteness and bulgeyness would go down. But no gone.

Still dificult to deal with. I chose the option of not wearing shades over them and so people can see it. I think some would rather I probably would wear it. I'm the center of curiosity at the moment. Many people I have avioded so that they don't ask.

Got a party tomorrow. Just imagining how difficult its going to be. Don't really want to spend the whole night explaining myself.

Thanks to all who replied to my posts recently.

[rosemary@umbilical.demon.]

For Kate, Harpo, and anyone else with a hydrops:

When I had mine, the sight cleared from the *edges* first. That is, when it was starting to clear, I could still see nothing but
white fog looking straight ahead in what would normally be the
centre of my field of vision, but gradually started to be able
to see more at the very edge of my field of view.

I don't know if this happens to everyone, but when you're trying to see any signs of improvement, you might like to try thinking
about your peripheral vision.

Hope you can both see some improvement soon!

Rosemary
--
Rosemary F. Johnson

[Dal]

Hi all,

Hvae not written anything for ages, partly as I have been away in America which was fantastic by the way and partly as I have had soooo many interviews for this whole teacher training thing!

Good news is that I got into the Institute of Education and from September next yr will begin my training to teach Social Science and Humanities, Im sooooo excited!

Other news is that I finally got a hospital appointment it was on Saturday and yes it is definately KC. Unfortuately vision is not good enuff at the mo to learn to drive but am assured that once I have some lenses fitted it will be fine.

Bad news is that they cant do this at my hospital (they used to), so have to wait for an appointment at the Western Eye Hosp, which is going to take a few months.

In the meantime am trying to read up on stuff for my course but am finding it very difficult, as often am seeint the letters double, pls tell me that this is normal!

Hope that everyone is well. Merry Xmas
Dal