Compiling info for an information leaflet...

[Lynn White]

Very True!

I had thought of calling the leaflet "The Hitch Hikers Guide to Keratoconus" at the time with a nice friendly "Dont' panic" on it....

[nicola jayne]

Lol thats a good name..
if it has not been mentioned ( in work and no time to look through the 5 pages of posts ), how about something about after grafts and for people with KC who cant wear / tolerate lenses.

just a thought

nicola

[shamsa]

I think this is an excellent idea! Teenagers have different concerns and priorities than adults and this could be very useful to give to teachers and schools when a teenager has been diagnosed. There is a leaflet on this site already concerning students http://www.keratoconus-group.org.uk/pub ... aflet.html but I think yours would be a good supplement to that.

I do have a lot of information by sheer dint of experience on how teenagers cope with KC, so would be happy to chat with you about it. And of course, this thread itself gives a lot of very useful information. In the end, I used this information for lecture purposes rather than an actual leaflet, so I am really pleased you are doing this project.

hi lynne

I have started the project but need alot more help and advice on what to include in it, I have looed at the one on the KC more infromation.
I woulod be really grateful if you could help and provide support, also are there anyt powerpoints made on this topic???

thankyou so much

shamsa

[Lynn White]

Nicola,
Those ideas are actually excellent but perhaps are outside the scope of what Shamsa is doing. Do you mean that it would be good to put everyone's post graft experiences and spectacle wear experiences in a leaflet?

Shamsa,
I don't have any specific power points on this but I do have some slides, some of which may be a bit advanced for your target audience but can be adapted. Can you send me your email address so we can chat about this?

[nicola jayne]

Hi Lynn,
yes I think that it would be good to have some sort of leaflet about post graft experiences, care and spectacle wear.
A lot of the info about KC is about contact lenses and such but I am sure that I am not the only person with KC in both eyes that does not wear contacts. Yet still gets dry eye, eye strain irritation etc..
I also think that it would be a good idea if a ''KC at work after a graft'' leaflet could be produced. It may give managers and hr and oh a better understanding of what their staff member has been through and how they can be a bit more supportive..... thats even if the managers are interested tho !!.
The thing aswell is that people do tend to believe what they read, and a lot of stuff online about KC and grafts etc.. is pretty black and white (apart from here ). Most of us know that with KC there is a lot of grey and that what could be fine for one person could be a disaster for another.
anyway I hope you catch my drift LOL
back to work I go

nicola

[shamsa]

Nicola,
Those ideas are actually excellent but perhaps are outside the scope of what Shamsa is doing. Do you mean that it would be good to put everyone's post graft experiences and spectacle wear experiences in a leaflet?

Shamsa,
I don't have any specific power points on this but I do have some slides, some of which may be a bit advanced for your target audience but can be adapted. Can you send me your email address so we can chat about this?

lynne my email adress is in a pm, and i have sent you a message and look forward to hearing from you, sorry for not posting sooner.

Thanks
Shamsa

eMail address edited out of this message to protect Shamsa's personal security. Andrew MacLean February 28, 2008