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: 1966
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 04 Feb 2013 3:05 pm

To answer your question about availability of crosslinking on the NHS, at the moment I only know of 3 hospitals in England that offer it - Liverpool, Sheffield and Moorfields in London. Though that may change depending on what NICE say when they issue their revised guidelines on the procedure later this year. Also bear in mind that people often still need contact lenses after crosslinking. If you'd like our information booklet about KC which covers the different options, do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you one.
All the best
Anne

sham31
Newbie
Newbie
Posts: 1
Joined: Tue 12 Feb 2013 6:56 pm
Keratoconus: Yes, I have KC
Vision: Other

Re: To all who have joined this forum recently

Postby sham31 » Wed 13 Feb 2013 2:36 pm

Hi my name is sham diagnosed witk keratoconus on both eyes though left one most affected one!
Next week have an appointment for C3R for the left eye..lets hope it not going to be very painful..
Looking forward to a positive outcome :)

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Anne Klepacz
Committee
Committee
Posts: 1966
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 13 Feb 2013 2:46 pm

Hi Sham and welcome to the forum. All the best for your crosslinking next week - let us know how it goes.
Anne

fitzy300504
Newbie
Newbie
Posts: 1
Joined: Wed 27 Mar 2013 10:07 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby fitzy300504 » Thu 28 Mar 2013 12:48 pm

Hi I've just joined to get a bit of info as I've been a k.c sufferer for over 10 years now I'm 34 and I feel my condition is getting worse i haven't been to eye hospital in years as I wear glasses to correct my vision but the last couple of weeks I'm starting to get a sore head when I wear my glasses and it only stops when I take them off ,but I need to wear them all the time when driving and in work ,should I contact my G.P and arrange a hospital appointment as I'm sick of having to pay over the odds to get my glasses changed ,I also have private health care through my work if that helps .

User avatar
Anne Klepacz
Committee
Committee
Posts: 1966
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 28 Mar 2013 3:15 pm

Hi Fitzy and welcome!
It sounds as if you might have reached the stage where contact lenses would give you better vision (though it's great that things have been changing so slowly that glasses have been able to correct your vision all this time). So yes, do get your GP to refer you to a hospital eye clinic - preferably a large city hospital where they see a lot of KC.
All the best and let us know how you get on.
Anne

miss milburn
Newbie
Newbie
Posts: 3
Joined: Mon 08 Apr 2013 9:41 am
Keratoconus: Yes, I have KC

Re: To all who have joined this forum recently

Postby miss milburn » Mon 08 Apr 2013 10:26 am

Hi,
My name is Laura, Im 31 and was diagnoised with K.C last week. Im waiting for an appointment to come through for sheffield Hospital to find out how sever it is and what my options are.
I'm feeling quite anxious at the moment because I dont know a great deal about this condition and all the information im reading is taking some sinking in.
My greatest concern is that my sight will deteriorates so much that contect lenses and/or surgery wont correct my sight and that I wont be able to lead a normal life.
Im hoping my appointment will arrive soon so I can get some answers to my worrying questions.
:cry:
.

Ladyburd
Contributor
Contributor
Posts: 45
Joined: Thu 30 Jul 2009 3:21 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby Ladyburd » Wed 10 Apr 2013 4:37 pm

Hey Miss Milburn

Don't be too down. There are several options for treatment, more now than ever. You have come to the right place, the forum and the members are fantastic. I'm sure you'll be able to chat to someone about joining your local support group too

When you go for your appointment, best to take someone with you as designated driver, also take a pen & paper to note down what the Dr tells you.

Following your appointment come back to the forum and ask lots of questions. Everyone's KC is different, but I'm sure the friendly bunch here on the forum will be able to help you with any questions, and also give you hints & tips

Hope it goes OK for you

C

miss milburn
Newbie
Newbie
Posts: 3
Joined: Mon 08 Apr 2013 9:41 am
Keratoconus: Yes, I have KC

Re: To all who have joined this forum recently

Postby miss milburn » Wed 10 Apr 2013 7:40 pm

Thank you Ladyburd, that's really reassuring. From what I have read on here, everyone is very caring and we'll educated when it comes to KC.
I will be back after my appointment and thank you for the tips for pen and paper. My husband will attend the appointment with me.
X

User avatar
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 » Thu 11 Apr 2013 7:04 am

Most people come to this forum when they are anxious like yourself. So you need to put in to contecxt that genrally most people posting on any support group forum are those who are having difficulties with their condition so more likely to be at the extermes of that condition.

From waht I understand from this forum and speaking with people at local groups, AGM's and confrences diagnoses in the thirties is rare and in most cases doesn't progress that far.

For anyone diagnosed with KC and as far as I am aware regardless of age 90% or more manage perfecty well with some form of vision correction either with glasses or more commonly contact lenses. It is a relative minority of cases that go on to need a corneal graft and even fewer still that require a graft in both eyes.
Gareth

miss milburn
Newbie
Newbie
Posts: 3
Joined: Mon 08 Apr 2013 9:41 am
Keratoconus: Yes, I have KC

Re: To all who have joined this forum recently

Postby miss milburn » Thu 11 Apr 2013 8:43 pm

Thank you Gareth, that sounds positive. One of my questions was about me developing this in my 30's and how it might progress and from what you have said, fingers crossed it might not get too bad. Thanks again.x

Hoping my appointment comes through soon so I can get the ball rolling to being able to see again :roll: x


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