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

longhoc
Moderator
Moderator
Posts: 348
Joined: Sun 26 Dec 2010 11:13 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby longhoc » Thu 18 Oct 2012 3:28 pm

Hi there tremtastic

Glad we've been able to be of some assistance

:D

Please don't hesitate to ask if there's any other information you need.

Best wishes

Chris

Lana367
Newbie
Newbie
Posts: 1
Joined: Tue 23 Oct 2012 10:12 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: To all who have joined this forum recently

Postby Lana367 » Tue 23 Oct 2012 10:27 am

Hi I am new on here. I live in Australia. I was diagnosed with KC when I was 14. I am now 45. I had corneal grafts at ages 22 left eye and 27 on right eye. I have worn glasses as well. I have tried contacts which was a complete failure. Purely by chance I got an appointment with A/Prof Grant Snibson. I am having an ICL done on 15 Nov in my left eye and a corneal graft on 7 the Jan 2013 on my right eye. . Very excited but very nervous about up coming surgery. Costing a fortune too. About $4000 for ICL and about $8200 for graft. Thought I wouldshare this with everyone. Have a great night. :D :D :D

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Anne Klepacz
Committee
Committee
Posts: 1954
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 » Tue 23 Oct 2012 10:49 am

Welcome to the forum,Lana, and all the very best with your operations. It highlights how lucky we are to have the NHS in this country so that we don't have to pay a fortune when we need surgery. Let us know how it goes for you.
Anne

marie123
Newbie
Newbie
Posts: 1
Joined: Thu 25 Oct 2012 6:54 am
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby marie123 » Thu 25 Oct 2012 7:16 am

hi i am new hear and i am so glad to find a place that will answer many of my unanswered questions and meet people who understand what living with KC is like, i am 37 years of age and have had this condition for as long as i can remember and sometimes it is quite miserable as i have a passion for arts and crafts especially sewing ,so you can imagine when i am sewing the first thing i come up against is trying to focus in on threading the needle and then if you are sewing 2 pieces of fabric together trying to see the seams line up together can be a nightmare but i usually get there and come up with a teddy bear or doll ,
i have been to a few opticians over the years and they have all told me different things like about transplants contact lenses ,some of them didnt even read my files before they put in the wrong contact lenses and sent me off for a walk around my local town virtually blind as they said the lenses were just settling and when i got back i told him about my KC and he said but you havent got it then looked at my files then said oh sorry you have got KC so that experience kind of put me off contacts ,so now my optician just renews my glasses each year and has not mentioned any other treatments for me ,but i am now fed up of glasses as they only help slightly and the glare i get off them is terrible and in poor lighting i am misjudging depth of steps etc so i have had a few bruised knees from tripping over ,
i have also read that i should be wearing special sunglasses on bright days is this true? as none of the opticians or specialists i have seen have never told me about this
anyway thankyou for letting me join your group and hope to speak to you all soon :D

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Anne Klepacz
Committee
Committee
Posts: 1954
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 25 Oct 2012 10:08 am

Hi Marie and welcome!
Most high st opticians rarely see anyone with KC and so don't have the expertise to fit specialist contact lenses. I don't know whereabouts you live, but if you ask your GP to refer you to a hospital eye clinic, you should find optometrists who have much more experience at dealing with the condition. And the variety of lenses that can be used for KC has increased a lot in the last few years.
If you'd like our information booklet on KC and the DVD of our 2009 conference which covered the options in more detail, do e-mail your postal address to anne@keratoconus-group.org.uk
All the best
Anne

ginny077
Contributor
Contributor
Posts: 12
Joined: Fri 27 May 2011 9:45 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby ginny077 » Fri 26 Oct 2012 3:46 pm

I constantly misjudge depths of pavements etc. and thought it was just me. Even with contact lenses in I seem to get it wrong. Steps I also find a problem. Whenever I go out to a concert at the O2 or at a stadium I find the steps there are a nightmare. As you don't have a stick, or a guide dog, the promotors think you are having them on and just think you want to be nearer to the stage. My husband says "Stay at home it's cheaper. Just put their CD on", it's not the same though. Just because we have varying degrees of sight loss doesn't mean we can't go out and enjoy ourselves. Last time when visiting Wembley I told them I had eye sight problems so they asked me if I'd like one seat on my own and another for my husband at the other end of the stadium. Do people ever listen to what you are saying, or do they just don't care?? I have now found that my new "duet" lenses last me for around a month at £108 per pair this could be quite an expensive year!! The muck from my eyes actually damage the inside of the lenses!! Bon Jovi are due to tour again in 2013, my favourite band, and I know that I will be given a seat at the other end of the stage so again, I'll see nothing!!!!! I'll still be buying a ticket or two though!!

1mummy
Newbie
Newbie
Posts: 1
Joined: Fri 02 Nov 2012 7:44 pm
Keratoconus: No, I don't suffer from KC
Vision: Other

Re: To all who have joined this forum recently

Postby 1mummy » Fri 02 Nov 2012 7:54 pm

Hi,
I am trying to research some infor for my son, he is 17 and has KC in both eyes, 2 years ago he had collagen cross linking in his left eye, we had to have this carried out privately since we were told it wasn't available on the NHS, the cost was kindly covered by our local rotary club. The cross linking appears to have stopped the KC progressing and may even have improved his sight slightly, however his sight is still very poor in his left eye (he can only just see the largest letter on the eye chart) He recently had a routine check up and now the sight in his right eye is deterioating and they have suggested that collagen cross linking is carried out in his right eye. Can anyone advise if there is any way i can get this done on the NHS ?

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Anne Klepacz
Committee
Committee
Posts: 1954
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 03 Nov 2012 3:46 pm

As far as I know, there are three hospitals in the UK which offer crosslinking on the NHS - Liverpool, Sheffield and now Moorfields in London. (If anyone knows of any others, please let us know). Anyone who isn't a patient of those hospitals would need to get their own Primary Care Trust to fund the procedure. I believe the way that works is that your consultant would need to make a case to the PCT that CXL is needed and then make the referral, but the PCT would make the final decision. A consultant can also make an Individual Funding Request to carry out the procedure him/herself on the NHS, but again the PCT has to agree to foot the bill.
I hope that helps.
Anne

Kazik
Newbie
Newbie
Posts: 7
Joined: Wed 31 Oct 2012 10:47 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: To all who have joined this forum recently

Postby Kazik » Sun 04 Nov 2012 8:42 pm

Hi everyone!

I am a KC patient - my illness was diagnosed in 2004. Both eye balls were affected, but I underwent a corneal transplantation 4 years ago (right eye was operated, only superficial layer of cornea was replaced). Right now I wear only glasses - with this correction visus isn't perfect, but it is good enough for normal living. I am considering having Mini A.S.R.K. method conducted by prof. Massimo Lombardi and logged on this forum to find out if anyone tried it and whether he's satisfied with effects (from what I have found at least one person on this forum underwent such treatment).

I come from Poland, so I' not native - pardon me for any lingual errors. ;)

Best regards
Kazik

RaggiA
Newbie
Newbie
Posts: 2
Joined: Mon 17 Dec 2012 2:12 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby RaggiA » Sun 06 Jan 2013 6:25 pm

Hey everyone.

I'm a 24 year old guy from Iceland and I just got diagnosed with KC last November after going through 3 different pair of glasses over the last year.

At first my optician made me try out a hybrid lens(left eye only atm) with silicone edge(sorry, don't know the names/types of the lenses).

I used them for just under a month but they hurt like hell everyday and I never got used to them, everyday I felt like I had a log in my eye so I went back to the doctors and he got me a new lens which she told me was an older type, it has a blue tint over the plastic middle.

I've been using the new one for about a week now and even though it feels better when I put it in(can't feel the edges like with the other lens) I get a mild burning sensation after a while and when I take the lens out my eye hurts like hell for 10-15 minutes afterwards.

I realize it's a long and painful procedure getting lenses that fit and are comfortable, and after having spent a month in pure pain/frustration I'm starting to believe it. :)

I haven't been able to do any of my hobbies since early december due to loss of vision and irritation with the lenses and I had planned on going to university to learn computer science next fall but I'm rethinking that atm since I can't spend more than a few minutes in front of a computer screen before getting headaches.

And it reeeaally doesn't help that noone I talk to has even heard of KC, let alone knows what it is..

Hmm.. after reading this post over I realize it might've been better suited to the rant forum, apologies. :)


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