MCR/NW GROUP LAUNCH A SUCCESS

[mike scott]

The MCR Group started on the road to what i hope will be a long and prosperous partnership with MREH.
The meeting was very well attended, i counted 25 people in the room , this included our guest speakers and facilitators Dr Cindy Tromans KC specialist cosultant and Debbie Morley, pre and post op cornea transplant care specialist and our very special guest Anne Keplacz.
Firstly i would like to thank these people very much for their support on whom as keratoconics we rely on so much.
Secondly i would like to thank the members themselves for there support and i hope this will continue and to expand.
The meeting took the form of a fairly intense Q & A session following introductions.
At times i have to say some of the questions were intense and strayed slightly into specific patient care. Cindy and Debbie handled the questions very well and indeed imparted some very enlightening information that i am sure everybody gained from in varying degrees.
Yes at times there were emotive and very deep questions and occasional emotional displays.
From this i realise just how important and much needed this group really is.
For everybody in that room it was the first time anybody had actually met somebody else with KC, so in that regard there was emotion.
Up until this first meeting we have all been fighting KC of course, but feeling alone and isolated and for many with little information about KC and the future it will bring.
There were a lot of very interesting Q's around surgery techniques and options which i think would be a very interesting and much needed topic for the next meeting.

DALKS / PK's / INTACS / C3R / POST OP LASERING and EXPERIMENTAL yet to be approved options.

Deep and probing as some of the questions were, shows me just how close to our heart living with KC is, and not surprising as this condition shapes and changes our lives.

However we must remember that KC is a very unique condition affecting us all in very different ways, so that treatment and management in its various forms is also very individual too, with treatment aimed specifically at an individuals needs, so as no KC in a patient is the same neither can be the care provided. In that respect it is tailor made treatment, almost designer if you will.
In that regard we must keep discussions at group meetings to topics that cover KC as a whole straight accross the board rather than try and delve too deeply into individual and specific needs, that are best kept to discussions on a 1-1 basis with each owns consultant.
Individual Q's are very much welcomed on the forum however.

once again thank you for so much interest and support in the MCR Group and i am sure we can all continue to support each other in this way.

remember together we can be strong and together we can conquer KC

Look forward to seeing you all at the next meeting (to be announced )

Mike

[Steven Williams]

Thanx for the review Mike.

Yes there was emotion and there was also tension.

I found it very informative although sadly some KCers remained silent and did not raise any questions.

I spoke to a KC attendee after the closure of the meeting and he said he did not wish to raise a question about his health care experience at MREH in case it would be detrimental to his future consultations.

I understand what you mean about getting into individual cases but this was inevitable when the MREH reps made no presentation and the whole of the meeting, apart from intros from everyone was devoted to open Q&A.

Look forward to the next KC Manchester meeting date which I recollect you saying will be held quarterly.

[morag]

hi
Whens the next group meeting?
I`d love to come!!!!
Thanxs
Morag