UK Keratoconus Self-Help and Support Association

Hello to everyone living with Keratoconus!

Recently I have found it really hard to explain my condition to people, especially when it comes to my lenses (Scleral). I know that there are booklets, leaflets and websites such as this one where people can obtain information but I really feel that there is a need for a documentary that describes Keratoconus. Perhaps one where they follow different people living with Keratoconus at different stages (First diagnosis, wearing new lenses and post op).

I'd appreciate feedback on this
Clarisa

Although I'm sure this is not entirely what you have in mind, there's a DVD in the works hopefully showing the meetings and conferences:
We talked about it here and there are other links within that thread:
http://www.keratoconus-group.org.uk/for ... php?t=1074

But I like to see something such as a documentary actually too. There's a local film company within the area that I live in called 'New Faces', and I have emailed them as a proposal for a suggestion for maybe a one off - they haven't replied but its early days, also next week I'm sending some stuff to the local newspaper to maybe cover something about KC ... we'll see ...

A tv documentary would be a good idea; if you could be sure that they would get it right! A video documentary would make it possible to plug it in and sho folks at home.

I usually resort to the paper and pen method. I draw a picture of the eye and make the cornea kind of pointed. This allows me to explain that what I see is not light focussed ib thge back iof my eye, but scattered painfully about the inside of my eye, giving me both poor sight and some pain!

I sometimes even draw a nice contact lens over the cone to show how much better life is (or in my ase was) when the lens was in place.

Where does this break down? My drawing skills are abismal.



See what I mean?

Andrew

Hi Clarisa

Do you think it was difficult to explain your KC to others for a particular reason? What I mean to say is do you think they really listened to what you had to say?
I have had this problem with some people for a long time. They ask what the problem is however, really are not a bit interested and by the time you take your second breath they have switched off. This usually results in a similar conversation being repeated quite frequently and me wanting to stamp on peoples glasses to give them a view of my world.

Maybe everyone should be made to wear scleral lenses for a while and then maybe silly comments such as 'well I wear my contact lenses from 7am in the morning until 11pm at night' would not be made

If you have KC you are very likely not going to be able to do this. Also as you probably look quite normal to other of course there can't be anything wrong with you can there?

Keep trying, Clarisa is all I can suggest eventually the penny will drop.

best wishes

Susan