UK Keratoconus Self-Help and Support Association

(((Friends)))

Hello there! Hehe we are looking for some nice people here who would like to write something for the site?

The home page has a section on treatment options covering lenses and grafts etc. But so far nothing has been added to this yet!

Following my success with piggy backing lenses i am writing something on this to add to the section. It does not need to be a long speech, just something to teach people.

I was wondering if after following posts here, Gareth would like to write something on Kerasofts? And Jayuk would you like to write something on C3R? We could then link to these pages when replying to new members here.

Anyone who would like to contribute something is more than welcome!! If you go to the home page above and click on the yellow page (KC information) you will find what information we need and Johns email to send it to!

To anyone who would like to add something could you please pass it by an optom before you would like it put up on the site, or let us know so that we can. We just need to be sure that we are giving out the right information!!!

Thanks!!! Love Sweet X x X

Sweet

Whole thing is a good idea

To be really honest, alot of the stuff on C3R is in the FAQ and also the C3R treatment thread that I kept...was this the stuff you meant?..In which case we can reference them?

I guess what I am saying here; is that are we making this a informal "patient experience"; but primarily highlighting the Management Option, and then referencing the method itself in practice?

If it were to be the other side, and im sure from what you posted its not, then I cant think of one person who can authoritively write on C3R yet...aside from probably 4 opthams who are still researching the treatment......(but im pretty sure this is not what you meant.....)

J

Hey Jay,

No it isn't a personal account just a general statement of what the treatment is etc. Just something for people to look up when they are looking for ways to manage their condition. Also to explain what our posts are all about and to give some ideas of what questions to ask optoms.

I was thinking that your C3R info is probably all on the FAQs forum! Will have to look at that, it doesn't really need references though as we don't want it to be too confusing!

Sweet X x X

I think it's a fairly good idea,and another idea is to put as much information in simplified 'laymans' terms.

Without wishing to cause offence,a lot of the medical information on here seems to have been written by middle aged,middle class,higher educated posters,and usually at some length,not all people with KC that are looking for a bit of info will fall into these categories and speaking from personal experience,may find themselves lost in what is often a very lengthy,over-elaborate and complicated resource.

I'm aware that this post itself may come accross in such a way,and believe me,it's made 'Brian' ache typing it so eloquently,when usually i'd say it as i would to the lads at football.

Hi Samba,

Thanks for your comments. Yes, we certainly do need to make the information we provide both easy to find and easy to understand. As Sweet said, we don't really want to include all the medical references; but just put up a paragraph or two on each option so that those who want to can make the relevant enquiries.

Certainly, before I came here and discovered sclerals, I would not have asked my consultant about them, and would very likely never have tried them out. As it turned out, they were wonderful for me pre-graft, and that's the sort of reason why we need this section of the site developing.

I think what Jay meant, Claire, was that you could link to other posts or explanations already on the site, for example the several threads that there have been concerning C3R.

This thread highlights several problems with organising information on a site such as this. Samba is totally correct - a lot of info presented about KC here and indeed, by professionals you meet out there in the hospitals and high street, is often very technical and confusing. It IS very difficult to explain things in a way that either doesn't go over people's head or talk down to them.

What I suggest is a layered approach. The initial short paragraph you have already for piggy backing and sclerals is fine as a kind of dictionary definition and is enough to be understandable to the newly diagnosed or people generally trawling through for information.

However, once people become more knowledgable, that will not be enough to satisify them. So perhaps you then need links to articles, websites, threads and so on underneath. Some could be written by professionals as well, as you need pros and cons in there written by people who do know how to fit lenses or perform grafts etc. These links won't take up that much space on the Treatment Option page itself but will form a useful resource.

And you know, what you do need is people to come along and say "Oi! can you lot talk in real English please!" So if any members have a beef about how things are explained - speak up!

Lynn

Thanks for that!

The FAQ forum was orginally for that, to put info together so that we can add it to the site!

The 'treatment options explained' page is only to give a brief understanding of what the treatment is about so that people can go and discuss it with their optom and look for further information.

There is going to be additional links added with references etc it's just that we don't have the basic info up yet!! This page is kinda like the glossary only put together to explain exactly what options there are. That is all!

Sweet X x X