UK Keratoconus Self-Help and Support Association

Just wanted to drop a line here. I have been away a little while dealing with other health issues besides KC and have recently come back to find some here having little digs at each other! Ahhh what happened?? LOL!!

We are all here to give support and air our views, but this doesn't mean that some here should be trying to upset people or show more authority in what they know. We all deal with KC differently and all of our experiences are important no matter how small.

I think that this did start out as a very interesting topic! The whole debate on lenses causing KC is a good one, though sadly one that would be almost impossible to prove. As KC can start at any age and we never know how it will end, how would we know if wearing a lens started the condition or made it worse? It is important to know the causes and assess the future risks and it would be really good if this could be done for generations to come.

I want to thank everyone who posted to the topic as it did make very interesting reading I was just sad to read how some replies came across. It is hard sometimes to write and relate to people online when you have never met them, but sadly i think if people here reread these posts they would see how badly some of them sounded. I am sure that it wasn't meant to sound as it did though and am hoping that everyone is now ok. I have sadly said a few things in posting that i have regretted later and maybe this post might be one of them!!

John, thanks for locking the post as it did fall off the track somewhat! Sajeev and Barney you give very well educated replies that were really interesting to read, thanks for the information! Andrew it is nice to see you back here, was wondering where you had gone! Jayuk you were very quiet here and didn't join in for a long time! LOL! Gareth couldn't miss you here!! Anne and anyone else i missed who were talking about genetics it was lovely to see you joining in! And last but not least Ali please don't leave here. You always give us so much support and advice from a different perspective! It is so important to hear from an optometrist who deals with KC as well as from friends here who have it.

I think very strongly about all of us posting here and want to say please everyone keep posting and let this place continue to be as welcoming as it has always been!! It was one of the longest posts we have had for a while so well done to everyone hehe and i didn't add a thing to it!

Hehe ... to steal from Jayuk ... GROUP HUG!!

Sweet X x X

Oui, d'accord!

good to see you back again, too, Sweet.

Andrew

Sweet,

Saying nice things will not bring you that drink I owe any quicker

Hello Sweet, you’re at least as sweet as your name. As of course are Gareth, Andrew and Jay.

It’s always difficult for anyone moderating forums to know how robust discussions should be. As it happens I run a few websites one of which has around 10,000 visitors a day where the forums have several hundred users online throughout the day so I appreciate the problem. (Nothing to do with KC of course.) Our moderators try to close threads as infrequently as possible and to use other methods to keep threads on track. Might not say much about human nature but often the numbers on-line will double whenever a thread gets a little “livelyâ€Â

Just to publicly reply to the points made above.

Indeed, knowing how hard to moderate is a difficult job. In the 2.5 years that this forum has been running, we've had to delete three topics. A handful of topics have been locked to prevent a non-constructive argument from continuing, and a dozen or so posts have had tiny edits because we need to protect the KC Group charity from legal action.

I'm therefore surprised that many users have been complaining about censorship - we are always keen to hear about new things. The only reason that any postings are edited is because of legal reasons, or if they become aggressive or excessively personal.

Our aim above all is to ensure that the forum is a pleasant place to visit. We don't want the flame wars or other nastiness here. The Charity's aim is to help people, and the website's aim is to welcome them.

I can also categorically state that only one person has ever been banned from the site, and that person is now back with us, so we can't be that bad!

"Rebel" or not, I'm glad to see that other fora are available. Anyone is free to visit any forum run by anyone. Different fora tend naturally to concentrate on different aspects. This forum is run by and on behalf of the UK Keratoconus Self-Help and Support Group, a UK registered Charity; and will naturally reflect the views and needs of that Charity and it's UK membership.

Sweet's rhetorical question has been answered enough in another topic, so I'm now going to censor myself and lock this post, lest it detract from the running of the Charity.

I'm happy to conduct any conversations about this by email or PM.