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Posted: Fri 01 Jun 2007 8:08 pm
by mike scott
Hi pat

in my opinion it is absurd that you should think for 1 second that you shouldnt be a member of this site. Your support has been invaluable to so many people and you deserve all of our support.

most definately get a second opinion and as soon as you can, you cant afford to have a mistake made as you will be the one who has to live with that.

i agree totally with Gareth that you should remove your lenses 48 hours before your next exam to give a much truer topography.

And if you need lenses to see regardless , then you need them. they are your eyes and only you know what you live with.

We are holding the first MCR meeting shortly and one of the things that i would really like to do is to raise awareness first of all of KC and secondly to work on making people aware of what its like to live with KC and the fact that not one of us is a "standard " case.


Posted: Fri 01 Jun 2007 8:14 pm
by charlene godfrey
hey thats quiet strange when I was first diagnosed I was obviously upset worried and fearfull of the future.I was refered by spec savers to my eye infirmary and had my first appointment with a very scary and frankly intimidating opto!
She quiet frankly told me that my KC was not that bad and whar on earth was i worried about as she had far worse patients than me.She also became almost aggresive in manner when I said I was not keen on the idea of lenses as I had tried them before and didnt get on with them!
Well 4 years on she is a very close friend and has seen me many a time out of hours she has recently sucsesfully campaigned my consultant for a transplant and I coundn't fault her.
Maybe some opto get iritated by referals from high street clinics:???!!Def ask for a second opinion as you have a right to good and fair treatment and all the best

Posted: Fri 01 Jun 2007 9:36 pm
by GarethB

We have had a few women join this start after being diagnosed with KC after pregnancy. Just like being a teenager the hormones are all over the place. I suppose if you have a hormone imbalance (my wife has been treated for this) her vision went a bit strange but only in that she became slightly more short sighted.

Posted: Sat 02 Jun 2007 10:57 am
by Anne B
Hi Pat
The person i saw at the QE11 was called Mr Toma, he and his team were great and i muched prefered to go there than moorfields.
They have a good contact lens department well its a room with one man but you do get to see the same person every time!!!
And they fit scleral lenses .
The only reason i ended back at Moorfields was because my allergic eye condition was so bad that Mr Toma sent me on to Mr Dart, They shared my care for a while and they were fantastic :D Do you think i've bigged them up enough yet ? :lol:
If you don't think you need to be going to Moorfields than i would go to your GP and ask for a refferal to the QE11, that is what i did. (shame i ended back at Moorfields :roll: )

Posted: Sat 02 Jun 2007 8:33 pm
by Anne B
Sorry for the post above :oops: I wrote it this morning with the biggest hangover :roll:
hope you can make some sense from it Pat.
I am going to bed :lol:

Posted: Sun 03 Jun 2007 9:35 am
by Pat A
Thanks - but it made perfect sense to me when I read it with a very similar condition as when you wrote it....(as a result of Friday's events!!)...if that makes sense too!! :lol: :lol: :lol:

Posted: Sun 03 Jun 2007 10:29 am
by GarethB
Anne, Pat;

The drink was purly medicinal of course.

Posted: Thu 07 Jun 2007 10:58 pm
by Susan Mason
Hi Pat

Sorry have only just read your message, I was away at the weekend as it was my wedding anniversary.

Please do email or call if you feel like a chat.

best wishes & take care


Posted: Thu 07 Jun 2007 11:11 pm
by Pat A
Thanks - I've just sent you a PM!

[ But a PS - How many years? It's our 30th later on this year!]

Posted: Fri 08 Jun 2007 8:08 am
by Susan Mason
Hi Pat

Just starting out, it's just 11 years - well I suppose we got past the 7year itch and John keeps reminding me that the more years pass by the more of my pension and income he will be eligible to claim if I decide to trade him in for a younger, younger model (he is 3yrs younger than me). :roll:

I expect he is only joking???? :twisted: