UK Keratoconus Self-Help and Support Association

Hi,
Had keritoconus for 20 yrs. They are considering a graft, but as normal trying to find something else instead.
I tried some new lenses in feb but they werent the right fit so now have to wait till july to have another fittin.
What im wondering is how bad till i am registered partially sighted.
I cant see the actually sight test board let alone the letters with either eye.
Surely this should be classed as a disability.

im finding it very hard to cope.
I have some old lenses i put them in yesterday as i was desperate to use my eyes. I put them in with disinfectant and burned the 1 layer off my right eye now. All because i cant see to read the bottle.(Tesco decided to make the disinfectant bottle look exactly the same as the neutralizer bottle, sensible uh)
I having to have someone to cook for my kids now and its usetting me.
I know im moaning buit as you all know sometimes it really gets us down eh?

Love Trace

May I ask why you aren't keen on having a graft?

And also why you can't get another appointment before July? That's a long time to wait when your sight is as poor as yours is.

I can't answer your question about being being registered as partially sighted but you have my every sympathy regards trying to carry on as usual in such circumstances. It isn't easy is it?

Hang in there, Alison

Trace

Good to meet you.

Only a consultant ophthalmologist can register you as blind, or partially sighted. Either make an appointment to visit your ophthalmologist or turn up at the eye department casualty. Tell the eye doctor about the difficulties you are having, and ask about registration.

If you are not talking to the actual consultant, the doctor will arrange for you to see the consultant who will talk to you about your situation. If your sight warrants registration, the consultant will fill in a form, explain to you what has been written and invite you to sign the form.

This will then be sent to your local authority sensory impairement team. Somebody will call and make sure that you have all the aids that can be provided.

Being registered does not prevent you from accepting corrective treatment at a later date.

As for the graft, I am a great advocate of surgery when other options have been exhausted. Please do not rule it out altogether.

All the best. Let us know how you get on.

Andrew

i would have the op tomorrow if they wud but they just keep trying lenses. They have now admitted that i have tried all lenses.
so hey lets go back to the first lens we tried lol.
Doesnt make sense to me either,
Love Trace

Tracy..

Andrew gave you good advice there. You need to talk to your GP about your problems and he can inform the ophthalmologist who then can register you if necessary.

You also need to tell your GP about the delays in contact lens fitting and see if he can't get this hurried up for you

Lynn

Drew who post here and a guy I know who is part of the Midlands group are both registed partially sighted/blind and have guide dogs.

With the help you get regarding being tought how to look after yourself etc wile being partially sighted/blind the two people I know live a relatively normal and fulfilled life.

Good luck with getting help.

Thanks all.
Do they judge your sight with correction or without for partially sighted.
Tracy

They judge it with contacts..

I was thinking of saying that actually. You see, if you can get good vision aided by CL's, then they won't really say you are partially sighted. BUT if you can't wear the lenses at all, then that is a differetn mattter. This is where KC patients differ from most others, in that their visual "status" depends on contact lens wearability (and to to be frank, availability if you are on NHS waiting lists).

Lynn

mmmmmmmmm.
I get vision with my left eye but my right eye they say they cant get the vision anymore, They tried all those round glass things they use and the vision was no better when she had exhasted those.
Tracy

I don't know what the criteria for offering a graft is nowadays but when I had my first it wasn't mentioned until neither eye could be fitted with a lens.