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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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 » Sun 06 Jan 2013 8:04 pm

RaggiA

Welcome to the forum! I'm sorry that it is taking time to fine the right lens for you, but don't give up hope: there are many different lens types and lens materials. The reason it can take a bit of time is that each of us is different: there is no such thing as a standard fit or standard lens for keratoconus.

I guess we ann know how hard it is to tell people about our condition when folk have never heard of it. I remember being asked if that was a kind of cataract, or glaucoma or macular disease. "No, no and no".

That's why the forum is such a benefit to folk like us.

Every good wish.

Andrew
Andrew MacLean

Starlight
Newbie
Newbie
Posts: 2
Joined: Sun 06 Jan 2013 8:29 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Ireland

Re: To all who have joined this forum recently

Postby Starlight » Mon 07 Jan 2013 5:02 pm

Hi everyone :)

I'm so happy to have found this place and to know there are others just like me, I was having a moment of no-one understands me and my eyes when I came across the forum ;). It's so difficult trying to explain to others what KC is, it's usually met by questions, confusion and shrugs.

Little bit about me, I found out I have KC October 2012. I'm 22, a Uni student from Ireland and I work part time. I have KC in both eyes with my left being a lot worse, my right eye had quite good vision up to recently and got me through. My KC is being treated with Hybrid Contact Lenses, after my specialist decided my eyes were too sensitive to even try the RGP lenses. I've had the hybrid lenses for almost 3 weeks now, I'm happy with the vision they provide but find it so difficult to put them in and take them out. My eyes sometimes get quite irritated after an hour or two and I end up having to take the lenses out, have my check up appointment on Friday so will see how that goes.

I'll leave it there for now, looking forward to talking with you all, hope everyone's having a good day :)

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Anne Klepacz
Committee
Committee
Posts: 1940
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 » Mon 07 Jan 2013 8:44 pm

Hi Starlight and welcome,
You've certainly come to the right place to find people who won't react with confusion and shrugs! I've never worn hybrids, but there's a lot of people here who do, so they might have tips to pass on. And hopefully your specialist will have some suggestions for you at your follow up appt. Let us know how you get on.
Anne

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TJonas
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Newbie
Posts: 1
Joined: Sat 12 Jan 2013 3:21 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: To all who have joined this forum recently

Postby TJonas » Sat 12 Jan 2013 4:05 pm

Hi Everyone

I am writing this still wearing an eye patch following successful LASEX surgery yesterday. I was diagnosed with Kerataconus about a decade ago but the condition was only severe in one eye and my overall vision has been okay. Since the diagnosis my condition in the affected eye worsened and became so severe that despite years of trying to get contacts to fit we could never get enough vision from the eye. We decided to go for a corneal graft and in November 2010 the operation was carried out. I had the stitches removed about 6 months ago. Yesterdays laser surgery was to remove the scarring and as it settles down my vision is already much improved.

It has been a long process and I am sure my journey is not over yet but in just over 2 years I have gone from almost no vision at all in that eye to being able to read without glasses or contact lenses. I was apprehensive about having eye surgery but I have been in good hands and everything has gone much better than I expected.

I look forward to reading about the experiences of others on this site and if anyone else is going through something similar I am more than happy to offer advice and encouragement.

Tim

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Anne Klepacz
Committee
Committee
Posts: 1940
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 » Sat 12 Jan 2013 6:02 pm

Hi Tim and welcome to the forum.
That sounds like an excellent result. All the best for continued improvement as things settle down.
Anne

ccmiller
Newbie
Newbie
Posts: 2
Joined: Wed 16 Jan 2013 1:17 pm
Keratoconus: Yes, I have KC
Vision: Other

Re: To all who have joined this forum recently

Postby ccmiller » Wed 16 Jan 2013 1:30 pm

hey guys.

Quick introductions are due. I'm Chris, a KC sufferer, diagnosed when 17, now 31. very advanced (opticians words: never seen anything as bad as yours) i've exceeded what is doable with specs and ordinary contacts, so i've got my referral to the Opthalmology department. oh the joys!

I am now legally unable to drive due to the low V/A with my eyesight, and have fibromyalgia as well just to add to the problems.

I have already decided that i do not under any circumstances want the corneal graft, and the hard contact lenses sound exceptionally uncomfortable. i'm really not sure what other options i have, so i'm going to be around for a while.

vision aids at the moment for me:

Spectacles that are not good enough
a magnifier
personalised settings on a computer to make it readable for me
an exceptionally loving and caring wife-to-be :-)

User avatar
Anne Klepacz
Committee
Committee
Posts: 1940
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 » Wed 16 Jan 2013 3:33 pm

Hello Chris and welcome,
Well, most people with KC never get to the stage of needing a corneal transplant, so you can put that worry to one side for now. And there are quite a few different contact lens options these days apart from the standard hard lenses, including special soft lenses for KC such as Kerasoft, hybrid lenses (hard in the centre with a soft surround) piggy backing (wearing a soft lens underneath a hard one to make it more comfortable) and scleral and semi scleral lenses. So hopefully you'll be able to find a lens that suits your eyes. And there are other options available at some hospitals such as crosslinking to stop KC progressing further and Intacs (corneal ring implants) to flatten the cornea.
If you'd like our information booklet about KC and a conference DVD, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send them to you.
Do let us know how you get on at your appointment. And you're in the right place to ask questions of people who know what KC is like!
All the best
Anne

ccmiller
Newbie
Newbie
Posts: 2
Joined: Wed 16 Jan 2013 1:17 pm
Keratoconus: Yes, I have KC
Vision: Other

Re: To all who have joined this forum recently

Postby ccmiller » Wed 16 Jan 2013 4:31 pm

Hi anne. thanks for the welcome :-) i have been told previously that my cornea qualifies for a corneal graft and that it was being left for as long as possible. I am not prepared to risk having no sight, for the hope that i can carry on seeing like i am now.

Contact lenses really really are a last resort for me... i can react and blink so fast that i can stop the pressurometer that the opticians use from getting a reading. i blink and flinch just putting on my glasses!

i've kinda decided that my option is to accept that i will never see well, and allow my eyesight to deteriorate naturally because all the options i have seem fairly brutal options that either a) don't work b) are open to huge risks or c) are just plain uncomfortable. i'll email in for the dvd and stuff later on :-)

thanks again for the welcome anne :)

Brighthourbabe
Newbie
Newbie
Posts: 2
Joined: Mon 04 Feb 2013 10:00 am
Keratoconus: No, I don't suffer from KC

Re: To all who have joined this forum recently

Postby Brighthourbabe » Mon 04 Feb 2013 10:37 am

I joined this site as I have a daughter with KC. Management seems to have been haphazard and a different person measures for new lenses every time. Consequently she has now had an abrasion and says the lens never fitted properly from day one. She is now waiting for consultant referral. Someone suggested cross linkage treatment would help. Is this readily available in UK
Thanks

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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 » Mon 04 Feb 2013 2:08 pm

Brighthourbabe

|Welcome to the forum.

I am sure that somebody with experience of crosslinking will respond to your post on another string.

Andrew
Andrew MacLean


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