To all who have joined this forum recently

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

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Anne Klepacz
Committee
Committee
Posts: 1996
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

To all who have joined this forum recently

Postby Anne Klepacz » Sat 17 Feb 2007 4:32 pm

Welcome! I hope you'll all get lots of information and support here. We do also have a postal mailing list of UK members who can get our basic information booklet about KC, regular newsletters and other information (eg conference booklets and a DVD of the 2005 conference). So if you'd like to become a 'full' member of the group, do e-mail me with your postal address and I'll send you our introductory information
anne@keratoconus-group.org.uk

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nicola jayne
Regular contributor
Regular contributor
Posts: 109
Joined: Tue 21 Feb 2006 12:34 pm
Location: lanelli
Contact:

Postby nicola jayne » Wed 21 Feb 2007 10:03 pm

Hi
i have just finished watching the dvd that was sent with this pack and it was very good and helped with a lot of questions.
nicola

blueeyes
Newbie
Newbie
Posts: 1
Joined: Wed 06 Feb 2008 8:13 pm
Keratoconus: Yes, I have KC
Vision: Other

Re: To all who have joined this forum recently

Postby blueeyes » Wed 06 Feb 2008 8:44 pm

:roll: Hi!

Just joined recently. I have suffered with Keratoconus for over 20 years and have had 2 corneal grafts done which I am pleased about.

I can see better than I could prior to the transplants and cope really well, but I still need help with certain tasks such as using the computer and reading.

I am interested in finding a chat room to talk with people who have this condition, if anyone can help me.

Thanks. :D

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GarethB
Ambassador
Ambassador
Posts: 4921
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Re: To all who have joined this forum recently

Postby GarethB » Wed 06 Feb 2008 10:36 pm

We used to have a chat room, but we were never on line at the same time :roll:

The forum is a load more active now that we have used it a bit like a chat room and nearly crashed the whole thing :oops:

Perhaps now is the time to have another go at a chatroom?
Gareth

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Sweet
Committee
Committee
Posts: 2240
Joined: Sun 10 Apr 2005 11:22 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: London / South Wales

Re: To all who have joined this forum recently

Postby Sweet » Sun 12 Jul 2009 10:17 am

Hehehe, Gareth that was a funny day!! Though I don't think John would have been very pleased if we crashed everything!! :lol: LOL!!!

A chat room would be a good idea to start again, maybe we should advertise beforehand and make it a Sunday drop in as more people could come? I will ask John how easy it would be to put a chat room back and see what the committee think!

Take care, loads of love Claire X x X
Sweet X x X

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KeithB
Newbie
Newbie
Posts: 1
Joined: Thu 27 Aug 2009 9:28 am
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby KeithB » Thu 27 Aug 2009 9:58 am

Hey,

I am new to the site too.

Just recently been diagnosed with KC in my left eye, and have another appointment with a specialist to discuss my options.
I get improvement with glasses in my left eye, however it seems to depend on the day and I think lenses maybe my best option :)

I quite like the idea of the kerasoft3 lenses so will be sure to mention these to the specialist when I next visit.

Great work on the site, I found it invaluable in finding information on the condition and reading up on it.
Its also nice to see a community of others in similar situations sharing advice, stories, and support!

:) Keith

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Andrew MacLean
Moderator
Moderator
Posts: 7707
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: To all who have joined this forum recently

Postby Andrew MacLean » Thu 27 Aug 2009 12:17 pm

Keith

Welcome to the forum. All the best with your appointment; for those of us who use them Contact Lenses (whatever type suites our particular eyes) are invaluable!

Don't put all your hope in a particular lens or lens type: Lynn White, one of our optometrist members who is clinical consultant for a company that makes contact lenses, sometimes describes KC as a bespoke condition; unique every time it is present, and unique in the responses it requires. For some Kerasoft 3 will be exactly the right lens, for some it will be the scleral, for others yet it will be hybrids or piggy-backed lenses, while for some it will be RGP corneal lenses. I think that the art of contact lens fitting to eyes with keratoconus is to identify first what sort of lens is going to suit this patient.

All the best

Andrew
Andrew MacLean

Mike Arnold
Newbie
Newbie
Posts: 4
Joined: Thu 03 Dec 2009 10:26 am
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby Mike Arnold » Thu 03 Dec 2009 10:42 am

HI, Im Mike, diagnoised with KC at 19 now 25 I am booked for a Cornea Graft due to my condition being advanced. I also have cataracts I have spoken to 2 different surgens 1 surgests doing both at the same time the other believes doing the cornea first then cataracts a year after. Has anyone else had the same problem or has any advice to aid me. Im booked in at moorfield on the 15th Feb 2010 for the graft with Dr Larkin who will only do the transplant the other is Dr Bell from tunbridge wells where i live who will do both.
Sorry if this post is in the wrong place let me know any of your thoughts. Plus im a newbie so it will take me a while to get around this site :) look forward to your feedback.

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Anne Klepacz
Committee
Committee
Posts: 1996
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Thu 03 Dec 2009 11:32 am

Hi Mike and welcome to the forum!
I do know of one member of the KC Group who had both done at the same time, although in that case it was a regraft 30 years or so after the original graft. Hopefully someone else with a similar experience might come along and tell you more.
All the best
Anne

hels229
Newbie
Newbie
Posts: 2
Joined: Fri 04 Dec 2009 5:34 pm
Keratoconus: Yes, I have KC
Vision: I'm coping with no aids

Intacs

Postby hels229 » Fri 04 Dec 2009 5:52 pm

Hi

I have had KC for 15 years. Glasses came and went about 4 years ago and I have spent the last 2 years trying to wear both soft and hard lenses with no success. I was offered intacs when they had only been approved by NICE for 12 weeks and was understandably nervous of them at this time, feeling like a guinea pig, and pretty much told that this would be the case to a certain degree. I am now being refered again to get this proceedure done, as all else has failed and my sight is deteriorating in one eye particularily badly and is a bit better in the other eye - both eyes are affected.

I dont want to alarm anyone, but I guess that what I need to know is, what exactly can go wrong with this proceedure? When I was originally selected as a "perfect candidate" for them I was told that if the op went wrong it would mean an automatic graft. Is this still the case now that the intacs are better known about?

What is the actual success rate long term of these and how long can you have them in for? Do they generally make vision better or is it a bit hit and miss. When I asked these questions originally I was told that after only 12 weeks of being able to get them in this country, all was A ok and fears all brushed aside apart from the "if the op went wrong it would mean an automatic graft" comment.

I have to do something so either way it will not affect my decision, but just feel like I need to know both good and bad sides of this and hear as much as possible about other peoples experiences.

Many thanks Helen


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