Poster at Manchesher Royal Eye Hospital

[ChrisK]

Well done & good luck CK.

Have a look round to see if they have put up the two I gave up them. They'll be wondering whats going on, especially if yours is laminated!

Who do you see at MREH and how do you find the service there?

I would love to look for yours but I'll be visiting the Kent and Canterbury. Perhaps we could volunteer a KC member to tour the country checking for posters.

Great stuff in starting this thread, I didn't know about the poster campaign.

[ChrisK]

Good news,

I took my poster into the Kent and Canterbury this afternoon and the lovely nurse put it straight on show.

[mike scott]

hi all
i am also a patient at MREH, my consultant is mr brahma
mike

[lou]

Hi all (im new)

I am also at Machester Royal and have been for 10 yrs i havent seen the poster that you are talking about
Where is it ?

My consultant is Brahma, i am due to have my first cornea transplant this June please could anyone tell me have they had it done at Manchester Royal and how did it go?

with luv
Emma xxx

[mike scott]

hi emma
welcome to the forum
how long have you been diagnosed with KC and what is your history, i'm sure we would all be interested as the more input we have the better our knowledge becomes.
sorry to hear that you are also at the transplant stage, hopefully everything will go well, keep us all posted on how things are going for you both pre and post transplant.
likewise with emma i would also be keenly interested in other peoples experiences at MREH as that is where i will also be having my graft
mike

[Steven Williams]

I am also at Machester Royal and have been for 10 yrs i havent seen the poster that you are talking about
Where is it ?

The posters should be on display in the contact lens fitting clinic area (that narrow corridor area with those hard uncomfortbale chairs down the middle and with the sliding doors into the consultation cubicles and the reception desk at the end).

As I explained the posters werent up at my last consultation a few weeks ago and my next appointment is the beginning of May so I'll see if they have appeared.

Thanx for introducing yourselves Mike and Emma. I saw Mr Brahma at my first consultation privately. Hes the consultant eye surgeon and presumably deals with those who have reached the corneal transplant stage.

Are there any other MREH kcers here and how do you find it. I've put my experience of MREH on several of my blogs here.

Does the Manchester KC group no longer exist?

http://www.keratoconus-group.org.uk/for ... m.php?f=13

Would be helpful if you could get the Manchester KC group going again Mike as there appears to be no KC group in the NW.

I'd certainly be interested in attending gatherings.

[mike scott]

hi steven
i was at MREH on the 15 march getting the news that i need my transplant i was there some time and in various sections of the clinic and cant say that i noticed the poster for KC, i always look to see if there is any general info regarding our condition and am always surprised that there isnt any. in some ways that makes me feel more isolated, like the condition is "brushed under the carpet" if you know what i mean.

regarding a manchester group , i dont know if there is one or not, there was supposed to be a group meeting last year but it was cancelled.
i posted asking when there would be another and nobody has responded to that as yet.........see main menu. i have had KC for 22yrs now and still havent met anybody else in person who has it . it would be helpful i'm sure esp as i am now waiting for a transplant to have regular get togethers.
i really dont know much on how to go about setting this up, so if anyone could help to do that , join forces so to speak then i'm sure it would be an interesting project and beneficial to manchester and northwest KC suffers present and future.
should we post this as a new topic and see if we can get something initiated?
mike

[GarethB]

Steven,

The last I heard was that the lady who strarted to form a local group was very unwell before the first meeting in summer last year I think it was. Since then I have not heard anything about if she is well again. We do ask at the committee meetings if anyone has further news, but till nothing.

Due to time constraints after the AGM the question was asked.

If anyone wants to get a Manchester/ Northern group going please contact Anne Klepatz and I am sure she and the rest on the committee will hepl where we can.

[Steven Williams]

hi steven
i was at MREH on the 15 march getting the news that i need my transplant i was there some time and in various sections of the clinic and cant say that i noticed the poster for KC, i always look to see if there is any general info regarding our condition and am always surprised that there isnt any. in some ways that makes me feel more isolated, like the condition is "brushed under the carpet" if you know what i mean.

regarding a manchester group , i dont know if there is one or not, there was supposed to be a group meeting last year but it was cancelled.
i posted asking when there would be another and nobody has responded to that as yet.........see main menu. i have had KC for 22yrs now and still havent met anybody else in person who has it . it would be helpful i'm sure esp as i am now waiting for a transplant to have regular get togethers.
i really dont know much on how to go about setting this up, so if anyone could help to do that , join forces so to speak then i'm sure it would be an interesting project and beneficial to manchester and northwest KC suffers present and future.
should we post this as a new topic and see if we can get something initiated?
mike

Sorry for not responding sooner Mike. There was no poster there at my consultation with Dr Cindy Troumans this Thursday 3/5/07.

I did not bother mentioning it anymore....adopting the selfish attitude of at least I know about the website!!!.....I give up.

As an individual you have very little influence on the system and no-one else here who attends MREH appears to be raising the issue.

Anyone any ideas of why the powers that be refuse/fail to display the poster? I agree with you Mike it does make you feel isolated.

Regarding a NW area KC support group the only expression of interest so far appears to be you and me. Until there is more interest
its unlikely to happen. I note the Manchester link with your last post has received a negative response.

Looking through the registered membership listing, for those who decide to disclose their location, there appear to be sufficient numbers to get a NW group going. Maybe a pm or an e mail would activate some interest?

[Anne Klepacz]

Hi Steven
I'm not sure what MREH are doing with the KC Group posters - I've sent them to two different people, so there should be one up somewhere by now! I'll try to chase it up. And there is progress on a Manchester group. We now have the support of MREH Head of Optometry, and should have a date for a meeting soon. This will go up on the site as soon as it's agreed, and we'll also do a mailing to all in the NW area to catch those who don't look at the website regularly. So I hope there'll be a good turnout when it happens.
Anne