Open area for East Midlanders

Announcements from the East Midlands local group

Moderators: Sweet, GrandPaClanger, patricia lessells

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Andrew MacLean
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Moderator
Posts: 7707
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Open area for East Midlanders

Postby Andrew MacLean » Thu 01 Sep 2011 12:37 pm

I'm initiating this string to let folk from the East Midlands post to this forum. I'm afraid you'll have to content yourselves with a single string until John sorts out posting rights.
Andrew MacLean

GrandPaClanger
Moderator
Moderator
Posts: 234
Joined: Sat 27 Mar 2010 9:05 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Open area for East Midlanders

Postby GrandPaClanger » Thu 01 Sep 2011 7:29 pm

Thanks for that Andrew, I know a number of people are keen to make contact in the EM area. Hopefully they will pop in here and say hello.

A bit about my "story" I have had KC for 30 years and managed with RGP's until January 2010 when I started to have issues with my right eye. I had a graft in May this and all is going well apart from the vision is rubbish. I am under the Leicester Royal Infirmary. I have been today and I have got to go back in to theatre to have the stiches adjusted (all standard stuff).

That’s my story what’s yours ?

Ian

trickytree
Posts: 0
Joined: Wed 11 Apr 2012 9:11 am
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: Open area for East Midlanders

Postby trickytree » Wed 11 Apr 2012 9:27 am

Hi, I'm Gary, live in Nottingham and I'm 37 years old. I was diagnosed with Keratoconus at 20, and have used specs mainly, although Vision Express fitted me with a pair of semi toric lenses 10 years ago which I wore only for going out (once a month at most - sadly!!). The vision was never good enough in the lenses to drive so I just wore my glasses 99% of the time.

I've been going to the same optician since they diagnosed me, Boots (formerly Dollon Aitchison) but have just had the most horrendous experience trying to get new glasses there, coupled with the fact that they have lost all of my records prior to 2007 which is a massive disappointment and left me with no confidence in their ability. Not only that, but I had a test in December, glasses made, they were useless, the test was wrong, new glasses came, they were off centre, the sunglasses I had made as my second pair were solid i.e. not tinted so had to go back, the replacements were then lost, the glasses were an awful fit .... the list goes on and on.

Anyway, that's me!!

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Anne Klepacz
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Posts: 1943
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 11 Apr 2012 9:54 am

Hi Gary and welcome!
It's great that you've had good vision in spectacles for all these years.
I hope you manage to get your new specs sorted out. But worth bearing in mind that the range of contact lenses for keratoconus has increased a lot in recent years. If your GP referred you to the hospital in Nottingham, you'd be seen by optometrists who regularly deal with KC and might be able to suggest lenses that would work well for you.
All the best
Anne

GrandPaClanger
Moderator
Moderator
Posts: 234
Joined: Sat 27 Mar 2010 9:05 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Open area for East Midlanders

Postby GrandPaClanger » Mon 16 Apr 2012 5:10 am

Hi Gary and welcome.

There are a few people in the group from the Nottingham area so you are in good company.

Ian

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 » Wed 08 Aug 2012 5:48 pm

Hi,

Im Lisa, I am 28 years old from Lincoln. I was diagnosed with KC at the age of 17 and have had various problems with lens intolerance over the years. I have currently found some lenses that are very comfortable. I have been told by my doctor that my KC is advanced and I have scarring on my cornea, particularly on my left eye. However, despite this, I have also been told that it has stabilised itself. I often worry about the future and the unpredictable course of KC and its great that there is a forum for people in the same situation, as when I try and tell people i have this condition they look at me like I have lost my mind as they dont know what it is and ask stupid insensitive questions. Would be great to hear from other sufferers around this area.

Thanks

Lisa xx

holmes
Contributor
Contributor
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 » Fri 10 Aug 2012 11:51 am

Hi Lisa

I'm Suzanne, I live in Mansfield. I was diagnosed with KC 23 years ago when I was 12 years old. I had a graft 6 weeks ago on my right eye (they could no longer fit a lens on this eye because the KC was very severe, I also have KC in my left eye and I'm still fighting with a RGP lens on this eye. I visit this site regularly so if you ever have any questions or just want to let off steam I am here! It is nice to know that there are so many people out there that understand how you feel, I found this site about 3-4 years ago and it has been the only oppotunity I have ever had to talk to other people with this condition! It has helped me so much through the tough times!

Suzanne

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 » Fri 10 Aug 2012 5:58 pm

Hi Suzanne,

good to hear from you and I hope your graft went ok. I had a few major problems with my eyes a couple years ago where my eyes were constantly red and watering. No dcotor could seem to tell me why this was happening, and I was eventually put on the graft waiting list. However, I was convinced in my head that the reason my eyes were reacting so badly wasnt because of my messed up corneas, but something else. Then one day a friend mentioned to me that I might be allergic to the solution I used. So off I went back to my eye doctor, and he changed me to a preservative free lens cleaner, and guess what, eyes have been fine ever since! Well I say fine, but Ive got quite severe KC especially in my left eye, but I am managing ok with lenses at the moment. I must admit that the thought of having a graft scares me so much. I often get worked up about it and convince myself that if I ever have to have one I will be one of the 1 percent of people who will go blind or something. Sometimes I really over think situations, and if I try to even attempt to tell people about my condition they just look at me confused and really are not interested. I had a really bad eye infection a couple years back and my eye was that swollen it had sealed shut. the other eye wouldnt tolerate a lens at the time, and my employers made me go into work even though i tried to explain to them that i could barely see a thing! Its so frustrating sometimes.

Take care

Lisa

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zeke
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Posts: 6
Joined: Tue 05 Oct 2010 10:30 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Open area for East Midlanders

Postby zeke » Sat 11 Aug 2012 9:59 am

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

holmes
Contributor
Contributor
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 » Sun 12 Aug 2012 7:50 pm

Hi Lisa

It was good to hear from you, I have had a few problems with allergy to solutions over the years. I have very limited use with lenses, the maximum wear time on a good day is 5 hours. I have tried to push it further at times but ended up with severe irritation and the intraoccular pressure goes up. I have accepted now that 5 hours is the max and I don't push it further. I only work 3 days a week now due to poor lens tolerance and I am look for a different job where I can manage with the poor vision better! I work at a hospital and my manager has been unbelievably unsupportive so it is time to move on.

Having the graft done was nowhere near as bad as I thought it would be, I had been dreading it for a very long time. In the end I had no useable vision so it got to the point where I had nothing to lose, it made the decision a lot easier but it was still scary preparing for it! It has been over 6 weeks now since I had it done and it was the best decision I have ever made! The support you get from this site is better than anyone else can give because we all know what it is like!

Take care
Suzanne


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