Thank you

General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

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space_cadet
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Thank you

Postby space_cadet » Sat 20 Jun 2009 10:40 pm

The words 'thank you' often don't express what is truly meant within a heart when said to someone,
I feel incredibly proud, honoured and privileged to have spent the last day or so with some of you,
others of you just time within this forum and community,
we have a uniting similarity which at the same time makes us unique
KC is what they call it,
yet if you are like me you may be unable to pronounce it most of the time.

I have got back to Leeds from Glasgow,
happy tears now sting my eyes,
as spending time with people who I don't have to ask to walk slower so I can ensure I don't loose them,
explain why I am wearing sunglasses on a cloudy day,
why a drink went flying as I didn't see the table
and much more besides.

Inspirational people exist, you are all incredibly inspiring and motivational,
I am proud to say I know you all,
privilidged to say I have been blessed to have KC and have the unity of friendship with others who we can stand in each others corners cheering celebrations and grunting at annoyance and frustration.

Knowing although KC affects us or someone we love,
by definition we aren't affected identically but to have a similar experience and willingness to allow others to know how life is for us,
that is what matters,
as by explaining to anyone who will listen
in theory I hope and dream
we can prevent others falling thru the system,
living in a world of darkness, fuzzyness, intolerance to light and much more,
we can in turn try and enable lightness and clarity for them.



This was meant to be a poem but arthritic fingers and a stuborn head not wanting to use a headset let alone try and think without crying yet more happy tears means it is a bit of a rant.

But thank you all from the bottom of my heart, you have enabled me to carry on swimming over the last 2months, in order to ensure the sharks disguised as the NHS don't attempt to eat me alive, instead I can I hope by the time they have the misfortune of next seeing me see a dolphin armed with awareness and information who is able to ensure she gets the treatment options that will enrich her life, so she can 'see' her dreams become reality,

Lea
xox
ps stopping now crying too much
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Andrew MacLean
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Re: Thank you

Postby Andrew MacLean » Sun 21 Jun 2009 7:44 am

Lea

That was rather beautiful: thank you for it.

The conference was good: not least because it was the first time I had ever met loads of the people there. :D

All the best

Andrew
Andrew MacLean

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Sweet
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Re: Thank you

Postby Sweet » Sun 21 Jun 2009 8:00 pm

Lea,

That was really lovely!! Thanks for posting it!

It was so lovely to meet so many people at the conference on Saturday, it was a really fantastic day! Really peaceful and relaxed, I really enjoyed spending time with everyone! Elizabeth it was a gorgeous place to eat later, the restaurant was lovely with fantastic food! Andrew it was so good to meet up with you after so may postings!!!

Great to have met so many people, hoping you all had a fantastic day!

Love Claire X x X
Sweet X x X

Image

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John Smith
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Re: Thank you

Postby John Smith » Sun 21 Jun 2009 8:10 pm

Hi Lea and Andrew,

It was really good to meet up and chat with you - it is always lovely to be able to put faces to remote names on a screen. It really does the soul good to have it reinforced that we're chatting to real people, not some Turing test! :roll:

Glad you enjoyed the conference... for me, the hard work starts now on authoring the DVD!

Here's to the next one. Roll on 2011 :mrgreen:
John

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Andrew MacLean
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Re: Thank you

Postby Andrew MacLean » Mon 22 Jun 2009 6:23 am

All the best with the DVD, John.

As was plain to all on Saturday, I am virtually illiterate in things related to computation. I am just amazed that someone has thought of a machine that works on the principle that 1+1=10, and turned it into a clever typewriter/virtual filing cabinet.
:D

Every Good wish

Andrew
Andrew MacLean

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jamesar
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Re: Thank you

Postby jamesar » Mon 22 Jun 2009 7:02 am

you sir, are a good man. I wish you a long and happy life.

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Anne Klepacz
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Re: Thank you

Postby Anne Klepacz » Mon 22 Jun 2009 11:17 am

Many thanks to all the people who came on Saturday and made it such a good day. It was great to meet so many new people, some of whom had flown or taken overnight buses just to be there! Our thanks too, to all our excellent professional speakers - optometrist and ophthalmolists - and to the member speakers who shared their stories in such an inspiring and entertaining way. And not least to Elizabeth who found us such a good venue and invited all the speakers.
Some of the committee members who came up from London spent part of Sunday in Glasgow waiting for our cheap afternoon train. Quite by chance we came across the Glasgow Mela - a great event in Kelvingrove Park with Scottish pipers, African drums, jazz groups, Indian dancers and many more that we couldn't stay for, alas! So a great end to a wonderful weekend.
Anne

Graeme Stevenson
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Keratoconus: No, I don't suffer from KC

Re: Thank you

Postby Graeme Stevenson » Mon 22 Jun 2009 6:19 pm

I would like to echo the sentiments expressed above. I do believe if all groups had the knowledge and support mechanisms of the KC group then the world would be a much better place.
Of particular interest were the stories told both privately and to the conference of how KC can affect the lives of sufferers and their families.
Hope you see you all again and keep in touch.

Haste Ye Back

Graeme

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Elizabeth Mair
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Re: Thank you

Postby Elizabeth Mair » Tue 23 Jun 2009 10:34 pm

Graeme,
Thanks for getting all these samples of CL solutions for us to try for the conference- handy travel sizes too. I went home with a few.


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