Open area for East Midlanders

Announcements from the East Midlands local group

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Lisamh1984
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Posts: 6
Joined: Wed 08 Aug 2012 5:40 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Lincoln

Re: Open area for East Midlanders

Postby Lisamh1984 » Mon 13 Aug 2012 8:15 pm

[quote="zeke"]Hi Lisa,
I am from from Lincoln. I have the "K" in both eyes . Been in contacts for over 15yrs. Fully understand how you feel, other peoples reactions and poor understanding,makes it very difficult at times.
Sorry you have had problems,buts here is good source of information and other people that know where you coming from with questions.

John[/quote]

Oh my god I thought I was the only person in Lincoln with KC!! every time i tell people I have keratoconus they think ive just said something about kerry katona! The joke is not funny anymore!x

Lisamh1984
Newbie
Newbie
Posts: 6
Joined: Wed 08 Aug 2012 5:40 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Lincoln

Re: Open area for East Midlanders

Postby Lisamh1984 » Mon 13 Aug 2012 8:17 pm

Hi Suzanne, i am glad that your graft was successful and that you feel it has benefitted you a lot. I guess I am lucky at the moment that i can wear contact lenses for quite a while and dont suffer much irritation. How come your lens tolerance was so low. was it due to the steepness of your cornea? x

holmes
Contributor
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Posts: 40
Joined: Tue 15 Jul 2008 6:54 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Mansfield

Re: Open area for East Midlanders

Postby holmes » Tue 14 Aug 2012 5:12 pm

Hi Lisa

The steepness of the cornea was certainly a problem, then lens used to rock when I blinked. I also had problems with the lens becoming tight, if I wore them for too long the white of my eye used to turn bright red and was irritated for a week afterwards. I soon learnt not to push it! I have never been able to tolerate them for long, they feel dry and my eyes water a lot. One of my consultants years ago said it was because the distortion in the cornea makes it more sensitive than a normal eye, not sure if this is true!

Suzanne

chris1972as
Regular contributor
Regular contributor
Posts: 89
Joined: Sat 25 Apr 2009 5:33 pm
Keratoconus: Yes, I have KC
Vision: On the waiting list for a graft
Location: derbyshire

Re: Open area for East Midlanders

Postby chris1972as » Tue 11 Sep 2012 12:18 pm

Hey Suzanna,

Like yourself I have struggled for many years with tolerance of contact lenses, and constantly face ignorance, and often from the medical proffesion, sometimes life gets that unbearable i feel i will self distruct, but i cling on to the belief that life can and will get better, like yourself I have had one of my eyes grafted, had it done back in july though tolerence with my remaining eye is poor, i have had to resort to shock tactics with the doctors when i have episodes of no tolerence like right now, I kind of get the hospital to personally call my GP and enlighten them on my suffering, let them know this is for real. Well nice to right on here to people that understand and care, hope everyone is well and goes from strength to strength.

kieran19685
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Posts: 146
Joined: Mon 03 Sep 2012 11:50 am
Vision: Contact lenses

Re: Open area for East Midlanders

Postby kieran19685 » Tue 25 Sep 2012 11:48 am

are there any KC meetings or groups in the East Midlands i live in Leicester and have had KC for the past 6 years

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Anne Klepacz
Committee
Committee
Posts: 2264
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Open area for East Midlanders

Postby Anne Klepacz » Tue 25 Sep 2012 1:57 pm

Hi Kieran,
Yes, the East Mids KC Group does hold meetings in Leicester. As soon as there's a date for the next one, we'll announce it on the forum.
Anne

Grant
Regular contributor
Regular contributor
Posts: 130
Joined: Tue 04 Oct 2005 4:05 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Leicestershire

Re: Open area for East Midlanders

Postby Grant » Wed 16 Oct 2013 11:34 am

Any plans for an upcoming meeting in the East Midlands? Would be good to meet up with others and share experiences etc.

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Anne Klepacz
Committee
Committee
Posts: 2264
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Open area for East Midlanders

Postby Anne Klepacz » Wed 16 Oct 2013 4:38 pm

Hi Grant,
I'm afraid you've just missed one which was held in mid September. I did put a post about it on the general forum at the time, though it didn't give much notice and then our website crashed! The East Midlands organiser also e-mailed all the people on her list, and I sent out a postal notice to other people in the East Mids area. If you want to be sure of not missing any meeting dates, do e-mail or PM me your postal address so that you get future notifications.
anne@keratoconus-group.org.uk

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Libby
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Regular contributor
Posts: 103
Joined: Wed 27 Dec 2006 8:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Derbyshire

Re: Open area for East Midlanders

Postby Libby » Mon 21 Oct 2013 7:05 pm

hi everyone - I'm from Derbyshire and was diagnosed with bilateral KC in 1980 - just wondered where you all attended hospital for your reviews and contact lens apps x

Libby x

Grant
Regular contributor
Regular contributor
Posts: 130
Joined: Tue 04 Oct 2005 4:05 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Leicestershire

Re: Open area for East Midlanders

Postby Grant » Wed 23 Oct 2013 4:29 pm

Leicester Royal Infirmary for me.


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