UK Keratoconus Self-Help and Support Association

So I went back to the eye department today (averaging being up there every 2 weeks, 3 if they let me) at the moment.

Explained why I am having issues with the RGP lens they gave me a few weeks back, sure enough I have a alergic reaction to the brand they gave me - *scowl*

So they are now suggesting 2 weeks with nothing in it, then to try piggybacking with a Kerasoft lens and a regular disposable soft lens. They also want to register me as partially sighted, but are incredibly hesitant to do so.

Said that they will write to university to explain more to them so theat in theory they can support me better (well anything would be a improvement, read past posts of rants about university and me n KC)

Also had a test done to check my tear production, and it is atrochus (sp*) to say the least, the dude I saw today was if honest a lot better than the ones I have seen recently.

So back to the eye department for me in a fortnight, well 10 days as I took the next available appointment they could give me.

Also got told I should of gone back when I first noticed a problemw ith the RGP's but explained that I am fed up of feeling like I am living in the department.

Lea
xox

Lea

Being registered as partially sighted would open for you a whole panoply of services. In your place I'd not dismiss the offer out of hand.

I hope that they can find a lens combination that suits you. As people here keep saying, the big problem with people with keratoconus is that ours is a 'bespoke' condition, each having a variation uniquely tailored to ourselves.

All the best

Andrew

Hi Andrew thanks for the reply,

I am wanting to find out more in terms of what can be offered if they go down the route of formally classing me as partially sighted, think in terms of university it will make my life a lot easier, but my specialist was suggesting it iwth one had on Thursday then not so keen with the other (typical NHS to give mixed messages)

That said university is getting me frustrated, I currently get documents now they have listened to me in size 30 print on blue paper (blue for my dyslexia) but finding it very hard to read the text as it is too small, blury, smudged, distorted, jumping around etc) today in the post I got sent a copy of notes for a single lecture next week and there is easily about a 1/4 of a reem of paper, I feel lowsy using so many resources, yet know a) I am entitled to and b) I need them.

*sigh*

Lea
xox

Registration is not irrevocable.

I was registered blind, but now I'm not.

Andrew

B was saying I should let them do so, then post graft (whenever the heck that will be) they can reassess and all that jazz.

Just draining me at moment.
x

can you not get all your university notes recorded? certainly in your lectures you should be able to record the lectures i would imagine.

most can be recorded, I am waiting for a new DSA (disabled students assesment) as mine was done 2 years ago before my eyes went rapidly down hill, the disability support team are awesome but my lectures are going out there way to iritate me it seems. got uni 4 days this week, think I will be ready to scream by the end of it.

LEa
xox