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: 2105
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 08 Jun 2011 12:53 pm

Hi Ginny - it'll be great to see you 18th. I'm so glad you've managed to swap days. I hope you'll find it useful. You'll certainly meet lots of other people with KC!
And all the best with the surgery when it happens. That should reduce the astigmatism left by the graft so hopefully you'll get much better vision.
See you soon!
Anne

Duguu
Newbie
Newbie
Posts: 2
Joined: Mon 06 Jun 2011 2:28 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Duguu » Sun 12 Jun 2011 7:25 pm

Hi Anne

Thanks for welcoming me to the forum, yes I guess I had mild KC and I managed my life quite well until now when I am having a few hiccups in comparison with some other members of the group. The link that you gave regading KC and work does not seem to work? http://www.keratoconus-group.org.uk.sit ... tions.html

I became a member a few months ago and I have already got your booklets and DVD, secondly thanks for sending the link with the conference information and I have already sent my completed form with the cheque. I look forwrad to seeing you all

User avatar
Anne Klepacz
Committee
Committee
Posts: 2105
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 » Sun 12 Jun 2011 8:02 pm

Hi Duguu,
Many apologies for the typos on the link. I've now corrected them on my previous post so I hope you'll be able to get to the leaflets. Let me know if you still have a problem. And it'll be good to see you on 18th.
Anne

Devious Angel
Newbie
Newbie
Posts: 3
Joined: Fri 15 Jul 2011 10:49 am
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby Devious Angel » Fri 15 Jul 2011 10:57 am

I have been suffering with Keratoconus for a while now, i have been between opticians and hospitals where they keep sending me back to the other one.
My optician has gotten fed up and is looking into sending me to a different hospital.
My friend bless her sent me the link to this site as she knew how frustrated i am getting.
I am recieving job seekers allowance but realistically know at the moment i have trouble seeing in an every day situation never mind in a work place.
It's nice to have somewhere that people understand and i can let off steam .

User avatar
Anne Klepacz
Committee
Committee
Posts: 2105
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 » Fri 15 Jul 2011 4:23 pm

Hello Devious Angel and welcome,
I'm sorry that you're having a frustrating time with your KC right now. But you've come to the right place to talk to people who understand how things are for you. Are you being fitted for contact lenses of some kind? If you'd like to know more about the various options for KC, do e-mail your postal address to anne@keratoconus-group.org.uk and I can send you our basic information booklet about the condition, plus the DVD of our 2009 conference which covers all the current options in more detail.
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 15 Jul 2011 5:43 pm

Hi All,
Had a great time meeting you all on 18th June. It is nice to know that "one "is not alone in suffering and everyone has a different story to tell.
Had surgery again last Tuesday 12th July. Had to spend a while in each recovery section of the theatres as no bed was available for me. Luckily the morphine was!!!
Am still off work with severe depression. I know how "devious angel" feels. How is it possible to hold down a job when you can't even see to walk down the road ? You need to work to pay the mortgage and yet some employers make your life hell so you cannot carry on with your day to day demands. How can I apply for a new job? Hello my name's Ginny I can't see too well or drive but I'd love to work for your company. I was shunted all over the place when I was first diagnosed. The optician agreed something was not quite right but the hospital said rubbish you're fine. After visiting Moorfields I finally found out what was wrong. Can you be referred there? Be forceful and refuse to be fobbed off. Ask your GP for referral to a specialist hospital.

I know it's early days but I cannot see to drive, and have noticed no improvement. Will it improve over time? I don't really know what was done just more cuts and stitches into edge of cornea.
I even managed to drop food all over my left foot when trying to take it out of the oven. I now have a large blister as the food was piping hot!!!
Maybe I'm not safe in the kitchen any more, or the car, or at work, or with the children, or the parrots..............
Best Wishes to all keratoconus sufferers. Ginny Dobson

Brenda e
Newbie
Newbie
Posts: 1
Joined: Fri 19 Aug 2011 8:31 pm
Keratoconus: Yes, I have KC
Vision: I have Intacs implanted

Re: To all who have joined this forum recently

Postby Brenda e » Fri 19 Aug 2011 11:21 pm

Hello!
I have had KC for 12 yearsknow. Well, that's when I was diagnosed. Used a hard lens in my right eye for almost a year before giving up as my eye swelled horribly with it in. At that time my left eye was lagging behind so I was still functioning with a soft lens in my left eye & nothing in my right. Went for a consultation for a cornea transplant. I was only 26 & couldnt imagine living life with one good eye & a 3 year old. so there I sat in the surgeons office. When I looked into KC on the Internet, there was maybe two sites talking about it, so a transplant seemed like my only choice. (thank goodness times have changed). The surgeon recommended I see his contact lens specialist in Philadelphia. I did & was fit with permasoft lenses & loved life again. Not a day went by I wasn't grateful for my vision. Ten years & two additional kids later, I ran into a brick wall. The company that made my lenses went out of business. I was fit for new lenses using the only company that still made soft/hard lenses. About two months later, I scratched my cornea. Anyone with KC knows that means antibiotic / steroid drops & no lenses for usually about 10 days. This wasn't good for me since I had no glasses (was told they wouldn't help & never had a problem before) & here I was the primary caregiver for my toddlers. So, the eye would get better & then it happened to the other eye. Again. And again. And again. Every time I put theses lenses in or took them out I was cutting my cornea. I don't know if my eyes were just tired of lenses or if these lenses just aren't for me, but I couldn't take anymore. The pain of the scratch, the headaches, the sun sensitivity. It was all too much over & over. So 2 weeks ago I had intacs placed in my right eye. So far, I see a very slight improvement. And that's only with the glasses I ended up getting a few months ago. With glasses, my left is 20/20. My right was never near good. So, I think a little improvement is better than nothing & the most I'm hoping for is to get back into lenses comfortably with my right. Now I may have higher hopes for my left of actually seeing well without lenses or glasses after I have intacs placed in it. My surgeon wanted me to do cross linking before intacs only bc it's still in the trial period. After I told him I wasn't messing around anymore & just wanted the intacs, he said I could def still do cross linking after. And that in hs opinion it may yield a better result since the cornea will already have had some help from the intacs.
There's my story, looking forward to reading others ...

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 » Sun 21 Aug 2011 7:34 pm

:D I can see again!!!
I think it's been about four years since I had any sight in my left eye and thanks again to my surgeon Mr. Tom Poole and optician Philip Saunders I have a new lens. It's quite a large lens that is hard but seems to have a soft layer inside. ( I will ask which one it is when I go for a check up on Thursday.) I have got up to four hours wearing but have already have knocked it out once and keep getting bubbles underneath.
Am still off work with depression. As I've said before it's bad enough having an eye complaint, you don't need your employers making life extremely difficult for you. Time to look for a new job now that I can read the local paper!!! When left eye finally has the O.K. from doctors it will be a case of having a graft in the right eye..............
Best Wishes to all sufferers.
Ginny

luke
Newbie
Newbie
Posts: 2
Joined: Sun 21 Aug 2011 6:55 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby luke » Mon 22 Aug 2011 6:47 am

Hello friends,

I've had keratoconus for about 10 years and have been wearing rgp lenses ever since. I live in Sydney, Australia.

Daniel Evans
Newbie
Newbie
Posts: 4
Joined: Thu 01 Sep 2011 10:18 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Daniel Evans » Thu 01 Sep 2011 11:09 pm

Hello everyone,
I was first diagnosed with KC when I was 14/15 and had RGP lenses when I was 16. My optician has experience with it and soon got lenses which fitted My eyes didn't change too much. However they did eventually change, and the lenses just started to pop out. As I was at university at the time, I kept going with them for a while, before just sticking to glasses, and not being able to see well. Once I had finished university, I went to the opticians, and he got me to go to the Birmingham eye centre. After a bit of a delay due to the snow last year, i eventually got an initial appointment, and after another delay as the appropriate paperwork wasn't done to book me a lens fitting appointment, I now have a new lens (a Rose- K2) for my right eye, and hopefully a new lens for my left eye will be here in the next week or so, which is good news as I am starting a Masters course later this month.


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