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

sanilmoopan
Newbie
Newbie
Posts: 1
Joined: Sun 05 Mar 2017 11:48 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby sanilmoopan » Sun 05 Mar 2017 11:58 am

Hello all,
Hope you guys are doing good.
I am new to this forum. And I am looking forward to gather lot of valuable information from you people. I have been using RGP lens for last 2years now. I recently relocated to UK. I live in Kent and am trying to find a doctor to consult. I want to get my eye scanned and confirm if it has progressed or not. I am also eager to hear, if there are any advanced lenses available here as i am having tough time with my rep lenses. My eyes get dry so fast and my job as a sw engineer is not easy with this condition....

Looking forward to some suggestions.

regards
Sanil

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Anne Klepacz
Committee
Committee
Posts: 1965
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 06 Mar 2017 10:41 am

Hello Sanil and welcome,
Ask your GP to refer you to a hospital with a corneal clinic - maybe Canterbury or Moorfields if you can get into London easily. And yes, there's quite a variety of contact lenses available for KC these days. If you e-mail your postal address to anne@keratoconus.group.org.uk I can send you our information booklet on the condition which covers the various options there are.
And if you don't want to wait for a hospital referral, have a look at our list of KC friendly optometrists to see if there's one near you.
www.keratoconus-group.org.uk/optoms/index.php

Bassetlady
Newbie
Newbie
Posts: 1
Joined: Wed 31 May 2017 6:23 pm
Keratoconus: No, I don't suffer from KC
Vision: I don't have KC

Re: To all who have joined this forum recently

Postby Bassetlady » Wed 31 May 2017 6:58 pm

Hi. First of all, I can't begin to tell you what relief it is to have discovered this forum. I do not have Keratoconus but my son, James, aged 23 has. We first became aware of the condition a couple of months ago when he had his bi-annual eyesight test. He had not experienced any visual problems but during the sight test it became apparent that there had been a vast deterioration in the vision in his left eye. I had never heard of the condition before that day and I must confess to getting really worried about the situation.

After a couple of tests, Keratoconus was confirmed and James was referred to an Ophthalmologist. His appointment was yesterday and the hospital have confirmed the he has Keratoconus in his left eye and slightly in his right. They are going to monitor the progress over the next 2-3 months and he will be called back for further investigation.

Now I know I can read up about the condition on the internet but I haven't done so as I'm wary of frightening myself so joining this forum is going to be a huge help. I have only just registered on here so haven't had chance to read any of the information available but I will be doing so. I just hope you don't mind having to answer my many questions so if anyone can point me in the direction of which posts to read first, I will be very grateful

Thanking you in anticipation

Gill

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Anne Klepacz
Committee
Committee
Posts: 1965
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 01 Jun 2017 9:28 am

Hi Gill and welcome to the forum,
It's always scary to have a diagnosis of a condition no one has ever heard of. But there's a lot that can be done for keratoconus these days. Just a 'health warning' about the forum. Most people post here when they're having problems so it's easy to get a skewed idea of the effects of KC as the people who get along fine usually don't post! We do have a very good information booklet about KC which is written for us by Moorfields experts. If you e-mail your postal address to anne@keratoconus-group.org.uk I'll put a copy in the post to you.
From what you say, it sounds like keratoconus isn't really affecting your son's vision at the moment. With KC, it's normal for one eye to be affected more than the other, and the 'good' eye then takes over so often people don't realise there's been in deterioration in vision. But if things do change and he has any problems at work, there are some leaflets about keratoconus at work that you can download from
www.keratoconus-group.org.uk/sitev3publications.html and which explain the condition in layman's terms.
I hope that helps.
Anne

pekasmum
Newbie
Newbie
Posts: 2
Joined: Sat 20 Nov 2004 12:57 am
Location: scottish borders

Re: To all who have joined this forum recently

Postby pekasmum » Tue 06 Jun 2017 8:42 pm

Hi my name is Elaine I was diagnosed with KC when I was 14 started wearing glasses then I have over the year I have had 4 lots of contact lenses all which I couldn't tolerate I am back using glasses some days there ok some day useless .

At present I am fustrated with the whole thing I use magnafers which are a great help on a bad day . I feel that there should be more out there for people with KC if I tell people I have keratacounus they say thay never have heard of it nap days I just feel forgotten .
elaine thomson

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Anne Klepacz
Committee
Committee
Posts: 1965
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 07 Jun 2017 4:43 pm

Hi Elaine and welcome,
There are a few people who can't tolerate any kind of contact lens, which is tough when you have KC. But I wonder if you've tried all the different types such as scleral lenses which cover the whole eye, or piggy-backing when you wear a soft lens underneath a rigid one? And you're right, most people have never heard of this condition and it isn't easy trying to explain. But the leaflets on KC at work or for students give a layman's explanation which might help (you can download them at www.keratoconus-group.org.uk/sitev3/publications.html).
And I'm sure there's lots of people here who'll understand your frustration.

Stirchley Cortez
Contributor
Contributor
Posts: 11
Joined: Tue 05 Sep 2017 10:19 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Stirchley Cortez » Tue 05 Sep 2017 10:31 am

Hi, I'm Nick & I've had Kera in my left eye for some 36 ish years which I've been managing with a variety of RGP's (when they decide to stay in my eye & not go on a little pavement holiday that is). I'm interested in where Birmingham Kera patients get seen - I've been under the excellent Mr Beaver at the QE but unfortunately he has gone long term sick, the clinic is being reorganised & things seem very up in the air at the moment.
Does anyone use the Birmingham & Midland Eye Centre as I'm thinking of getting referred as they may be more Kera focused (forgive the pun!)

I tried to post this in the West Mids section but wasn't able to.

Thanks All

User avatar
Anne Klepacz
Committee
Committee
Posts: 1965
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 06 Sep 2017 1:34 pm

Hello Nick and welcome,
Quite a lot of our West Midlands members use BMEC - in fact, KC Group meetings for the West Mids used to be held there, but have now moved to a quieter and more central location in a meeting room in John Lewis, above New Street Station. You'll find a notice about the next meeting there in October on the West Mids forum. Do go along if you can. And if you're not already on our mailing list, do e-mail anne@keratoconus-group.org.uk and you'll get notifications of future meetings.

Stirchley Cortez
Contributor
Contributor
Posts: 11
Joined: Tue 05 Sep 2017 10:19 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Stirchley Cortez » Fri 08 Sep 2017 8:42 am

Thanks Anne,

If I'm not working I'll certainly go along.

Nick

RedOnion
Newbie
Newbie
Posts: 6
Joined: Thu 17 Aug 2017 8:05 am
Keratoconus: Yes, I have KC
Vision: Other

Re: To all who have joined this forum recently

Postby RedOnion » Fri 08 Sep 2017 9:56 am

Hello all,

Relatively new to the forum and it's been a great help just reading but feel I'd like to contribute now. Anyway, I'm Dave, 34, and just recently diagnosed with KC though I know I've had it for a number of years, it was a change of optician that caught it. I'm 6 days on from having CXL done in my right eye and almost 7 weeks from having the left eye done (which seems to be going well, far too early to tell about my right).

I'd like to say thanks to everyone who posts, shares their stories and to those who put the work in to make the forum a welcoming place and good resource. if it's welcome, I'd like to make a post detailing my journey, as all seems to be going well and to share in a (hopefully!) positive story.

Thanks all.


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