Thorny questions about expert advice...

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

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

User avatar
GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Wed 10 May 2006 8:55 am

I'll put my paddle away for a while and stop stirring things :twisted:
Gareth

User avatar
Alison Fisher
Forum Stalwart
Forum Stalwart
Posts: 334
Joined: Sat 18 Mar 2006 12:56 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Leicester

Postby Alison Fisher » Wed 10 May 2006 9:48 am

Been thinking about this again. :roll:

On the issue of encouraging silent members to post we could have a newbie section - or we could have a lens section and a graft section but I think we would then be running a very high risk of creating (or appearing to create) the much dreaded cliques. :(

It's the nature of internet forums for people to join and never post. The regular posters on any of them are only a small percentage of the total membership. I'm pretty sure if I arrived here newly diagnosed I would have posted, but then I tend to jump straight in when I join a forum anyway. :oops:

The phrase you can lead a horse to water but you can't make him drink keeps coming to mind, as does the fact that if we temper our posts so as not to distress people we don't even know for sure are even reading then we are doing ourselves a huge disfavour every which way possible.

As ever there are no easy answers. :(
grafts in 1992 and 1996

User avatar
John Smith
Moderator
Moderator
Posts: 1941
Joined: Thu 08 Jan 2004 12:48 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Sidcup, Kent

Postby John Smith » Wed 10 May 2006 9:57 am

I've been following this debate quite carefully, and about the only positive action we could take that could be useful I think is that we could create a "mild KC" forum... so people (not necessarily newbies) can post those "stupid questions" which they'd be embarrassed to ask in the current forum.

Not sure whether it would be worthwhile though, as it just helps us to create a second class of web user.

I'm sure the debate will continue.
John

User avatar
Anne Klepacz
Committee
Committee
Posts: 2294
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Thorny questions

Postby Anne Klepacz » Wed 10 May 2006 10:21 am

Just to say that I have already sent Lynn a stack of business cards and some KC booklets to take along to her meeting to raise our profile among optoms. Lynn's already mentioned all the other things she's planning to do. And, Claire, yes, we do send the booklet free to all new members (though many send a donation in return) but we also get some large orders from hospital eye depts and private optoms - though I have to say the hospital ones have dried up recently as they all try to balance their books!
Anne

User avatar
jayuk
Ambassador
Ambassador
Posts: 2148
Joined: Sun 21 Mar 2004 1:50 pm
Location: London / Manchester / Cheshire

Postby jayuk » Wed 10 May 2006 3:24 pm

I think theres quite an easy solution to this, and would solve alot of issues around how this board seems to be getting so polluted

Break the Forum down into catergories; (change names as required; but to the effect of the following)

Newly Diagnosed with Keratoconus
Contact Lenses for Keratoconus
Corneal Grafts
Emerging Treatments
FAQ
Ask the Optician (Lynn,Ali, Lynn's fellow partners in crime from the AOP, etc)
Chit Chat

Simple solution for a simple problem....which seems to be just getting bigger.

Whilst many here would agree that this is a Self Help group; its always good to have Professionals also post, so that we can also challenge them and question there ways of dealing with treatment/advice........otherwise we dont evolve and we all just remain standstill and not actually making a real tangible benefit!. This place is almost getting to be like the Labour Party!...Change is good!...especially if we are taking things forward.....

J
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP

User avatar
GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Wed 10 May 2006 3:30 pm

Jay,

Where would you post the following scenario.

"What are the contact lens options I need to consider. I am 12 months post graft and I can not get good visual aquity from glasses. Are there any other sight correction or surgery I need to consider?"

This affects many post graft people would they post in your new contact lens section or graft section.
Gareth

User avatar
Carol Vines
Regular contributor
Regular contributor
Posts: 70
Joined: Mon 09 May 2005 2:58 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Market Harborough

Postby Carol Vines » Wed 10 May 2006 3:31 pm

good list there maybe also one

glasses for KC sufferers

as some mild KC sufferers only wear glasses and have not reached/maybe never will reach a stage where they have required information on different types of contact lenses etc.

just a thought may encourage more of the mild KC/newbies to post knowing all stages are more than welcome, we're all here for support and don't wish to scare anyone off or make them feel their troubles are trivial :)
Caz

User avatar
jayuk
Ambassador
Ambassador
Posts: 2148
Joined: Sun 21 Mar 2004 1:50 pm
Location: London / Manchester / Cheshire

Postby jayuk » Wed 10 May 2006 3:36 pm

Jaysus Bajaysus!

Gareth you want me to do everything!..I only have one brain cell you know!

Well the list was a starting point...but what we need to appreciate is that it does NOT get too big.....

But how about

Newly Diagnosed with Keratoconus
Contact Lenses for Keratoconus
Corneal Grafts
Post Graft Vision
Emerging Treatments
FAQ
Ask the Optician (Lynn,Ali, Lynn's fellow partners in crime from the AOP, etc)
Chit Chat
Misc

I think this covers nearly all issues we would see....and plus it covers the poster with a new query, via the MISC section.


J
KC is about facing the challenges it creates rather than accepting the problems it generates -

(C) Copyright 2005 KP

User avatar
Sweet
Committee
Committee
Posts: 2240
Joined: Sun 10 Apr 2005 11:22 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: London / South Wales

Postby Sweet » Wed 10 May 2006 5:08 pm

Ok i think that too many forums and we would confuse everyone! I only said about a different one for surgery posts as this is what seems to trouble new posters more. If we break down every single post and place it in a new forum it would mean that some posts would get missed.

Maybe try a new member forum and see what happens, but other than that and adding one about grafts i would leave everything else as it is.

Sweet X x X
Sweet X x X

Image

User avatar
GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Wed 10 May 2006 5:11 pm

Jay,

Was just giving a possible scenareo, at the moment the boar layout is nice and simple which is what we want for when we can not see.

Having a long list of different forums may equally put people off. Back to Lynns original post was around encouraging people with the more milder and if there is such a thing the more common types of KC to actively participate on the board as they too will probably have much of value to offer.

The second part was getting the information about what the group does out to the professionals who are likely to see the first signs of KC and refer these poeple to a specialist.
Gareth


Return to “General Discussion Forum”

Who is online

Users browsing this forum: Google [Bot] and 62 guests