North West England KC self help group

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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Steven Williams
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Keratoconus: Yes, I have KC
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Location: North Lancashire

North West England KC self help group

Postby Steven Williams » Sat 17 Oct 2009 12:32 pm

Just being creative, leading on from this thread:-
http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=13&t=3398&start=20

Your mission/objective is to create a successful NW KC self help group. How would YOU achieve it?

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space_cadet
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Re: North West England KC self help group

Postby space_cadet » Sat 17 Oct 2009 3:34 pm

Be good to have something up north :)

Let me know what help I can, if you want my number just PM and I shall pass it along.

Lea
xox
6.5.9 DX KC Lm RSevere
14.8 R on list
22.1.10 Bump up list
11.3 R FULL THICK
29.3 Legally Blind
29.4 1/2stitch out
23.6 All stiches out
5.11 R Cataract dx
10.2 Block R found
(and more)

User avatar
Steven Williams
Forum Stalwart
Forum Stalwart
Posts: 321
Joined: Tue 18 May 2004 10:48 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: North Lancashire

Re: North West England KC self help group

Postby Steven Williams » Sun 18 Oct 2009 12:38 pm

Sent: Sun 18 Oct, 2009 12:41
From: John Smith
To: Steven Williams

The following is a warning which has been issued to you by an administrator or moderator of this site.
This is a warning regarding a post made by you.

Hi Steven, I've moderated your post becasue you have "outed" a list of members that you've obtained by going through the server logs. We don't feel that action is appropriate, despite this data being publically available, without permission from the 110 people involved. We have therefore removed this post. You are free to re-post omitting the names, but giving the statistics.


Regards,

John


Just for the record and on a need to know basis for the whole of the KC community here I copied and pasted the membership basic records of 110 members who had disclosed their location as being in the NW. Any registered member can peruse the 183 pages on the "members" link. The records show:- name, location,number of posts and date of registration.

The purpose of the exercise was to prompt a response to establish a NW KC group.

I did not feel it necessary to get permission from individuals as the records are already there. In a way I find the mod/committee action taken rather hypocritical in view of this fact and imo goes against the best interests of KCers.

I have received communication from a few members who raise in my opinion legitimate concerns about how this forum is dominated by a handful of committee members and how it is "transplant experience" biased because all these individuals are transplant KC patients. It is a very valid point imo.

I would encourage any KCer who wishes to make a post here to do so after carefully reading the terms and conditions of posting and being compliant with them. After doing so and posting it I would also recommend that you copy and paste your work because the practice adopted here is for moderators to remove it immediately without any consultation or issuing an instruction for you to remove it.

Everyone of my posts on this website (including those I have posted in the off topic section) imo have been compliant, respectful and truthful. Despite this I have experienced censorship and locking of threads on several occasions without any reason. Is it too controversial to raise the tough key questions like does the wearing of RGPs exaccerbate the progression of KC? How can you find the top quality KC healthcare professionals and centres of excellence of KC treatment?

Is civilised open and reasoned debate not allowed her?

If I have offended any of the 110 NW KC names I listed I do apologise.

Peace, truth and respect as always to everyone.


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