hello there gosh it feels like ages since i looked on here properly.
Well as you all know i had ,loads of props sorting out the right lenses. I have never set foot in moorfields or know where it is but my speacialist in yarmouth has been fab.( Is moorfields only if it is really severe or for people local to it) Finally got there and finally made it to my driving test and passed. Now they have called my kids in to be checked for KC, still concerned of a higher risk although they say theres no link to neurofibromatosis (another condition i have)
anyways
I love my lenses i feel like a new women, without them (even with my glasses) i feel like i am about 90!!
I cant believe some of the posts i read, i just want to say Love and respect to all of the members and moderators. I have really appreciated you, i have had answers from you that i have not been able to get elsewhere. For me this is not about what should have been done for me, could have been or might be.
It is about broadening my world, confering with other people who have the same condition at different levels. and just chit chat because we can understand each other in ways others cannot because of similar experiences.
Its amazing because i can say something things that i would not say to family, which is weird as i do not really know any of you on a personal basis.I think it is a trusting KC bonding thing what do you reckon !!
support and friendly banter
Moderators: Anne Klepacz, John Smith, Sweet
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kerrie phillips
- Regular contributor
- Posts: 82
- Joined: Wed 28 Feb 2007 7:34 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: east anglia
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Pat A
- Forum Stalwart
- Posts: 661
- Joined: Fri 08 Dec 2006 9:42 pm
- Keratoconus: No, I don't suffer from KC
- Vision: Contact lenses
- Location: Herts
Hi Kewrrie
Good to hear things going well for you - and I agree you are so right - this is a great place where you can ask whatever you want about KC and no-one (tell me if I'm wrong huh!!) thinks you are stupid! But oh how I wish I could get on with my RGP's and feel 50 again!!!
As for Moorfields, well if you live fairly close & can get there easily that's where one tends to get referred to - and it is supposed to be the best. Certainly people who aren't making progress at their local hospital or have very rare conditions may also get further referred to Moorfields too.
But from what I have read on this forum there are many really good local hospitals who provide as good a service - if not better - for KC patients. And often the smaller local hospital will have more time for you, as to see a patient with KC will be more unusual for them! ( I once went to my local hospital eye clinic it seemed like 9 out of 10 patients were there with cataracts!) Moorfields see us KC'ers all the time and there's a risk we might get stereotypical treatment when it's not appropraite sometimes.
Now then, let's see, it would only take me about an hour and a half to get to Gt Yarmouth......... about the same as Moorfields.....!!
Good to hear things going well for you - and I agree you are so right - this is a great place where you can ask whatever you want about KC and no-one (tell me if I'm wrong huh!!) thinks you are stupid! But oh how I wish I could get on with my RGP's and feel 50 again!!!
As for Moorfields, well if you live fairly close & can get there easily that's where one tends to get referred to - and it is supposed to be the best. Certainly people who aren't making progress at their local hospital or have very rare conditions may also get further referred to Moorfields too.
But from what I have read on this forum there are many really good local hospitals who provide as good a service - if not better - for KC patients. And often the smaller local hospital will have more time for you, as to see a patient with KC will be more unusual for them! ( I once went to my local hospital eye clinic it seemed like 9 out of 10 patients were there with cataracts!) Moorfields see us KC'ers all the time and there's a risk we might get stereotypical treatment when it's not appropraite sometimes.
Now then, let's see, it would only take me about an hour and a half to get to Gt Yarmouth......... about the same as Moorfields.....!!
Pat
We do not stop playing because we grow old;
We grow old because we stop playing.
We do not stop playing because we grow old;
We grow old because we stop playing.
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morag
- Regular contributor
- Posts: 74
- Joined: Tue 10 Jan 2006 9:12 pm
- Keratoconus: Yes, I have KC
- Vision: Other
I cant believe some of the posts i read, i just want to say Love and respect to all of the members and moderators. I have really appreciated you, i have had answers from you that i have not been able to get elsewhere. For me this is not about what should have been done for me, could have been or might be.
It is about broadening my world, conferring with other people who have the same condition at different levels. and just chit chat because we can understand each other in ways others cannot because of similar experiences.
Kerrie I totally agree with you
It is about broadening our world and conferring with others with the same condition on different level, that’s how we will be able to help to draw a true picture about KC, then those questions of what should have could have or might be will never be asked!! I so glad you have a great way of putting words down I wish I had your gift I seem to get it all wrong and I’m being miss interpreted
Thanks
Morag
P.S this forum is monitored you are not allowed to ask anything you want
It is about broadening my world, conferring with other people who have the same condition at different levels. and just chit chat because we can understand each other in ways others cannot because of similar experiences.
Kerrie I totally agree with you
It is about broadening our world and conferring with others with the same condition on different level, that’s how we will be able to help to draw a true picture about KC, then those questions of what should have could have or might be will never be asked!! I so glad you have a great way of putting words down I wish I had your gift I seem to get it all wrong and I’m being miss interpreted
Thanks
Morag
P.S this forum is monitored you are not allowed to ask anything you want
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Matt Allgood
- Committee
- Posts: 47
- Joined: Wed 11 Jan 2006 1:56 pm
- Location: London
Rights and responsibilities
Does one have the right to shout 'fire' in a crowded theatre?
A worked example: someone posts a message on the Forum that makes defamatory / libelous statements about a third party, in breach of the terms and conditions of Forum entry. The third party then sues the trustees of the Keratoconus Group who, as legal owners of charity property, own the Forum. With its modest assets wiped out by the costs of legal action, both the Keratoconus Group and the Forum folds.
Solution: to avoid such a deleterious scenario, we ask Forum users to observe the terms and conditions of Forum entry and, where this is not the case, take appropriate action.
Regards
Matt Allgood
KC Group Treasurer and Vice Chair
A worked example: someone posts a message on the Forum that makes defamatory / libelous statements about a third party, in breach of the terms and conditions of Forum entry. The third party then sues the trustees of the Keratoconus Group who, as legal owners of charity property, own the Forum. With its modest assets wiped out by the costs of legal action, both the Keratoconus Group and the Forum folds.
Solution: to avoid such a deleterious scenario, we ask Forum users to observe the terms and conditions of Forum entry and, where this is not the case, take appropriate action.
Regards
Matt Allgood
KC Group Treasurer and Vice Chair
"It takes so long, and so much work, to achieve simplicity." (Alfred Hitchcock, 1977)
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kerrie phillips
- Regular contributor
- Posts: 82
- Joined: Wed 28 Feb 2007 7:34 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: east anglia
-
Matt Allgood
- Committee
- Posts: 47
- Joined: Wed 11 Jan 2006 1:56 pm
- Location: London
It was aimed at anyone who fails to grasp that by not observing the terms and conditions of entry to Forum one is putting the charity's assets, including the Forum itself (and the personal assets of trustees by the way), at risk.
I'd like to think that all Forum users are intelligent enough to take this on board - not that I'm offering you the opportunity to prove me wrong, of course.
Regards
Matt
I'd like to think that all Forum users are intelligent enough to take this on board - not that I'm offering you the opportunity to prove me wrong, of course.
Regards
Matt
"It takes so long, and so much work, to achieve simplicity." (Alfred Hitchcock, 1977)
"Does one have the right to shout 'fire' in a crowded theatre?"
The answer to this is clearly no if it was a joke to scare people by saying a lie, and the person in the theater should not be left to leave without "their nose out of joint"
However if someone smells smoke then there IS fire, and so some kind off action is required, then anyone and everyone has a right to shout fire. (Just continuing the similarity and the difference)
In a "broad church" (which is a wonderful thing) these deferent out looks will happen, its part and parcel.
The answer to this is clearly no if it was a joke to scare people by saying a lie, and the person in the theater should not be left to leave without "their nose out of joint"
However if someone smells smoke then there IS fire, and so some kind off action is required, then anyone and everyone has a right to shout fire. (Just continuing the similarity and the difference)
In a "broad church" (which is a wonderful thing) these deferent out looks will happen, its part and parcel.
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