Quicktopic posts: Jun 2001

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

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

Ray

Postby Ray » Tue 05 Jun 2001 5:03 pm

Hi Kevin and All,
I've also just found this site after seeing a poster on the wall at Moorfields when I was there on Monday. I already know a lot more than I did!

Good to see everyone so positive too. I don't think KC has had a major affect on my life thanks to the treatment I've had at Moorfields including a corneal graft a few years ago. I'm very grateful to have been born at a time when these techniques are available.

Every time I visit the hospital and look around at the white-sticks, guide-dogs, and often people in very obvious pain, I feel very fortunate. For anyone going though a rough patch with the condition at the moment I hope it soon comes right for you. I'm sure it will.

Best wishes, Ray

elaine -----dover

Postby elaine -----dover » Wed 06 Jun 2001 7:40 am

Sue
Good to see that you are so positive which is a great pick me up for those of us who are not managing to keep on top of things.This week has been dreadful with my lenses-my eyes have suddenly become ultra-sensitive to the sun so I am permanantly streaming.Sometimes I want to put my lenses in the path of a very heavy moving object and never have to wear them again but I know it's just a blip/I don't think there is one of us who hasn't experienced moments of extreme self-pity but it really doesn't help.
I am still waiting for an appoitment to see Ken so it's doubtful to arrive before you go. Good luck and say hi to Ken for me.Perhaps we could suggest syncronised appointments that would really go down well with the receptionists!
Elaine

Freddy
Are you okay? There has not been much from you lately. I hope things are going well. Elaine

Sue Ingram

Postby Sue Ingram » Thu 07 Jun 2001 4:52 am

Hi Elaine, sorry to hear you are having some bad eye days at the moment - its a real pain isn't it? We seem to go for ages just jogging along with no problems and then WHAM! everything goes up the creak! I am experiencing terrible problems at the moment with the allergic conjunctivitis due to the hayfever season - very itchy, sore eyes and tons of mucus - I also hate contact lenses at present. I love the summer but not this. So, all of you out there who are suffering at the moment, we are thinking of you. Like Elaine says, it's just a blip, and we can overcome these. Tommorrow is another day, as they say. SUE

Kate Love

Postby Kate Love » Thu 07 Jun 2001 3:20 pm

It is really great that we have new fellow sufferers joining in with the chat! I love the idea of requesting synchronised appointments!! Anyone in Kent who is at a loose end on Saturday, Elaine (Dover) and I are meeting in Canterbury for coffee. We are meeting outside the County Hotel at 11am and we would love anyone else to join us. I have promised to wear my KC T shirt for easy identification!!

Ian - Oxfordshire

Postby Ian - Oxfordshire » Thu 07 Jun 2001 5:04 pm

How about producing (I AM volunteering) a flyer for KC Group (contact details etc) that people can download from here (perhaps in Word format) and photocopy to pass to their local hospital, pin to an office noticeboard etc... ?

If you are interested then post the information and format preferred and I'll do the rest.

I'm off ot Oxford Eye Hospital tomorrow - Ken is there.

Regards
Ian (alias Whiteduck)

Mike Oliver

Postby Mike Oliver » Fri 08 Jun 2001 8:20 pm

I note Ian's suggestion about fliers and am rather confused. This suggestion was made a couple of weeks ago and I posted a message in reply. We have had group fliers for some years and these are available from the Group address by post--they are not yet on the website.We are reviewing a host of internal and admin issues and proposed projects now' of which more news soon. A newsletter has been printed and will be posted out in the next few days.
If any of you have accessed this discussion group without knowing of the Keratoconus Group, full details and information are available on the Group website http://www.keratoconus-group.org.uk

Ian - Oxfordshire

Postby Ian - Oxfordshire » Sun 10 Jun 2001 7:29 am

Mike,

Take your point that fliers are already available so no work needed to produce them - but there is a saving in admin costs to the group if we were to upload them to the website and allow members to print them.

Don't get me wrong - the website is a great resource and Tony has spent a lot of his spare time creating it but with little effort (again I am volunteering), these additional features can be added.

If I am stepping on toes by suggesting this then just say the word and I'll go away.

Best Regards
Ian (aka Whiteduck)

Mike Oliver

Postby Mike Oliver » Sun 10 Jun 2001 12:32 pm

Thanks Ian and no question of etepping on toes. Simply that ,following conference, we are reviewing everything both internally with the Group and the projects and problems which have to be addressed. Every offer of help is very welcomeincluding your own. Like most voluntary groups wheels can turn slowly but we are getting there and will definitely get back to you on this.The success of this discussion area proves that there is a real need for greater communication between us all. I think we should be aware that the majority of those on the group's mailing list still do not have access or regular access to internet
If anyone else has suggestions all will be welcome.

Alex

Postby Alex » Sun 10 Jun 2001 4:49 pm

I no longer have KC!

My cornea (left eye) ruptured due to an infection, and was replaced during an emergency operation - again by Mr. Daya at the corneo plastic unit at East Grinstead.

Due to the catastrophic failure of the cornea a full thickness graft was required. Hence I now have a DLK in my right eye and full graft in my left.

There is no doubt in my mind, having visited KCH Canterbury, William Harvey (Ashford) and the excellent unit at East Grinstead, that the standard of care at EG under Mr Daya is infinitely superior. In fact if I had not been transferred from Ashford to EG I would have lost my left eye completely.
As I now have DLK in one and full graft in the other I can definately confirm that the DLK procedure under MR Sheraz Daya is totally preferable. Thanks to him and his team of excellent surgeons I now have two eyes.

I'm off to find enex-KCers site!

Good luck everyone!

Alex

Kate Love

Postby Kate Love » Sun 10 Jun 2001 5:07 pm

Alex
I don't know what to say (a first!!) We all dream of life without KC, but I feel that you went to rather drastic lengths to make the dream become reality!! How is the vision? Elaine and I met up for coffee on Saturday, and we thought you might join us next time. You could still be an honorary member of the KC group until there are enough of us to set up an exkc group! I agree with your comments about the variety of care - I have suffered at the hands of KCH Canterbury! Still, it may all change now the election is over!!!???!!!


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