UK Keratoconus Self-Help and Support Association

Well, I sent an email to Anne Klepacz about membership and the up coming Conference.

I have to make mention publicly of what I got in the post here and how unbelievably useful it was.

I wasn't expecting the 3 well printed booklets, in nice big letters and handy reference guide. Truly I could have used this information at the very start of KC onset. I firmly believe whoever visits this forum should join, but more specificially those new to KC, the amount of helpful, factual and personal, information covered in the literature that I received is a small goldmine and something I would strongly recommend to anyone to have.

My family and friends have been concerned about my up coming graft and I've been relying information to them as I discovered it, these booklets thou, not only cover some concerns they had but also took it a step further and actually helped them understand what KC is, how its managed and what to expect, the various ways to treat the condition and its affects on us.

So today concerns have been addressed in a more thoughtful and reasoned fashion, alleviated worries and given much more understanding on the subject for my family and friends, because not only have I been suffering this but my family specificially have had to deal with the wider impact that KC has in my life. I can't say how important those 3 booklets have been but they have had much more value than me just telling them as I went along.

I intend now to bring the booklets with me to the clinic next friday and talk to my consultant as I'd like to see this information more readily available to all the KC suffers in the clinic, I hope to get a poster up, a few about the place (so I need to find out if there is a website poster or an existing UK KC poster available that I can distribute) and start getting more people from my neck of the woods involved in this website, maybe not the forum but at least the general website where they can find all the information they need and hopefully add to our membership numbers and feel like I do, that we're not 1 in 3000 or isolated, not on keratoconus-group.org.uk.

So a huge massive thank you to the people that run this website, the conferences, and to those that help maintain it and keep stuff moving along. It is appreciated and very much needed and if I can help I shall, more over with some renewed feelings on this subject I hope to start promoting awareness of KC and start generating more interesting where its needed.

Hello

I agree with what you have said about the UK Keratoconus Self Help and Support Group and the great job they do regarding providing easily understandable information in a format that can be understood by all.

Regarding a poster there is a section off the home page, About KC with a sub section ' A flyer for KC for you to distribute'

(Hopefully the link below will work)

http://KC.roundel.net/flyers/index.html

Maybe if it is felt an update would be useful or more variety of posters someone with some IT knowledge could offer their services to Anne and the committee to help produce this?

My understanding is that all the good work done by the group is on a volunteer basis so even more reason for a big thank you and well done to be said.

Susan

Yeah thank you for the link, I've looked at them and they're not exactly what I've had in mind, but I've started already with a few designs more 'poster' orientated A4 sized that I'll submit for comments, feedback and usefulness later today.

I mean no offence by that but I want a poster design to put up on the posterboard in the clinic that has the same look, style and finish as any other poster, I'll incorp the same details and copy the site colors obviously, I just want to make it more 'posterisk' any eye-catching

Hello Knight,

Thanks very much for your comments, which I'll now make "sticky" so everyone gets a chance to read them!

As for the "posters", I agree that they're not very poster-like - they're one of the few untouched remnants of the "old" group website that I've not got round to updating.

Please feel free to produce updated versions - if you pass a copy to me, I'll get them on to the main site!

Just wanted to add something here as well!

Thanks John for sending my details on as i couldnt really see to register! The info was really helpful and nice and big so even i could read it!! LMAO!!!

It is nice to finally have some info which is set out well and clearly so that we can all understand it!

Keep up the good work!

Love Sweet X x X

Hello all

Anyone know where we are up to with a new poster?

Was it a no goer or is it just down to funding now? Each time I visit the eye clinic, which is quite often at the moment I always ask my husband to check around for KC group and general KC information however, it seems to be not there. I know from speaking to my optom that he has other patients as just recently he made a generalised comment although I have never seen anyone with KC yet. Maybe I should take a sign with me at next visit KC patient, willing to answer questions? A bit like taxi for ....

Susan

PS seriously on the poster if we can assist please let us know, I sem to recall that Knight had done the hard work and put something together re an updated design.